Bordering Biomedicine
At the Interface
Series Editors Dr Robert Fisher Dr Margaret Sönser Breen
Advisory Board Professor Margaret Chatterjee Professor Michael Goodman Dr Jones Irwin Professor Asa Kasher Dr Owen Kelly Revd Stephen Morris
Professor John Parry Dr David Seth Preston Professor Peter L. Twohig Professor S Ram Vemuri Professor Bernie Warren Revd Dr Kenneth Wilson, O.B.E Volume 29
A volume in the Probing the Boundaries project ‘Making Sense of: Health, Illness and Disease’
Probing the Bounderies
Bordering Biomedicine
Edited by
Vera Kalitzkus and Peter L. Twohig
Amsterdam - New York, NY 2006
The paper on which this book is printed meets the requirements of “ISO 9706:1994, Information and documentation - Paper for documents Requirements for permanence”. ISBN: 90-420-1999-9 ©Editions Rodopi B.V., Amsterdam - New York, NY 2006 Printed in the Netherlands
Contents Introduction Vera Kalitzkus and Peter L. Twohig
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Part 1 Humanist, Social Science and Interdisciplinary Perspectives on Health, Illness and Disease The Musician, the Diarist and the Construction Worker: Interdisciplinary Perspectives on Health, Illness and Disease Peter L. Twohig
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Stanislaw Wyspiański (1869-1907): The Last Self-Portrait of the Syphilitic Artist Tomasz Śpiewak
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Part 2 The Epistemology of Biomedicine The Anthropology of Aetiology James Davies
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The Social Construction of Disease: Why Homosexuality isn't Like Cancer Matthew McGrattan
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Green Fingers or Pink Viagra? Female Sexual Dysfunction and Medicalisation in Contemporary Medical Discourse Katherine Angel
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The Communication of Diagnostic Information by Doctors to Patients in the Consultation Peter J. Schulz
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Contents
Part 3 Biomedicine in a Socio-Cultural Context Subaltern Theories of Health and Illness: An Ethnographic Study of Mexican Women With HIV Disease Betania Allen When the Diagnosed Talk: Ethnographic Narratives of Mental Illness Bindhulakshmi Critical Excess: Sex, Drugs, Intervention Aaron Goodfellow 'Normal Gone Bad': Health Discourses, Schools and the Female Body Emma Rich, Hannele Harjunen and John Evans
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Part 4 Beyond Biomedicine: Ethics, Experience, Voice Midwifery, Consumerism and the Ethics of Informed Choice 197 Philippa Spoel Towards a Concept of Hope: A Functional Reconceptualization Stephen Michael Neff Embodied Practices and Subjectivity in Psychopathology Ian Tucker
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Getting By: The Lived Experience of Patients with Cystic Fibrosis and their Carers of Waiting for Lung Transplant Kath MacDonald
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Speaking About the Unspeakable: Cervical Screening in New Zealand Judith Macdonald
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Welcome to a Probing the Boundaries Project Bordering Biomedicine appears within the Making Sense of: Health, Illness and Disease project series of publications. These projects conduct inter- and multi-disciplinary research aiming to explore the processes by which we attempt to create meaning in health, illness and disease. The projects examine the models we use to understand our experiences of health and illness (looking particularly at perceptions of the body), and evaluate the diversity of ways in which we creatively struggle to make sense of such experiences and express ourselves across a range of media. Among the themes these projects explore are: • •
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the ‘significance' of health, illness and disease for individuals and communities the concept of the ‘well' person; the preoccupation with health; the attitudes of the ‘well' to the ‘ill'; perceptions of ‘impairment' and disability; the challenges posed when confronted by illness and disease; the notion of being ‘cured' how we perceive of and conduct ourselves through the experiences of health and illness ‘models' of the body; the body in pain; biological and medical views of illness; the ambiguous relationship with ‘alternative' medicine and therapies; the doctor-patient relationship; the ‘clinical gaze' the impact of health, illness and disease on biology, economics, government, medicine, politics, social sciences; the potential influences of gender, ethnicity, and class; health care, service providers, and public policy the nature and role of ‘metaphors' in expressing the experiences of health, illness and disease - for example, illness as ‘another country'; the role of narrative and narrative interpretation in making sense of the ‘journey' from health through illness, diagnosis, and treatment; the importance of story telling; dealing with chronic and terminal illness the relationship between creative work and illness and disease: the work of artists, musicians, poets, writers. Illness and the literary imagination - studies of writers and literature which take health, disability, illness and disease as a central theme Dr Robert Fisher Inter-Disciplinary.Net http://www.inter-disciplinary.net
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Introduction Vera Kalitzkus and Peter L. Twohig Biomedicine, the dominant organizing framework of modern medicine, is built upon the foundational concept that disease is located in the body and that disease is linked to some injury to the body, usually in the form of a pathological lesion. Biomedicine is a relatively recent framework, emerging only in the late eighteenth century and articulated and expanded with increasing rapidity since those first steps. David Armstrong has described biomedicine as the “most successful theory of health and illness.”1 Clinical practice within the biomedical model has as its objective the identification of the lesion and its treatment or management. Within the biomedical paradigm, there was, initially, little space for the perspectives of social science or the humanities. While the metropolis of biomedicine was consolidating its authority, other perspectives were pushed to the borders. According to Armstrong, “the first contribution of social science to medicine … lay in offering complementary and supportive explanatory models for biomedicine.”2 Or, as Aaron Goodfellow notes in his contribution in this volume, “[c]ulture is pictured as something crucial to the treatment of disease only in the sense that it must be worked through if medical science is to operate to its maximal effect.”3 Many scholarly disciplines border biomedicine and can make a contribution to social theorizing about health, illness and disease. Recent discussions take many forms. Critical medical anthropologists, for example, insist that biomedicine is a cultural system and therefore never neutral nor objective. Political economy demands that we situate our analyses within struggles over wealth, inequity and a range of other issues that unfold on local, national or international levels. Humanists have consistently and insistently argued that the best physicians were those able to consider patient values, beliefs and a range of other factors alongside decisions based on biomedical models. The acclaimed Canadian physician William Osler, using an appropriate biomedical metaphor, argued in 1920 that the ‘humanities are the hormones’ to suggest their central role in clinical decision-making and their important place within the biomedical body.4 If we are to rebalance research efforts in our contemporary analyses of health, illness and disease, we need some form of social theorizing. The moral and ethical implications of new medical technologies, such as the new ‘race-based’ pharmaceuticals targeted for particular communities, are only the most obvious examples of areas of biomedicine that are ripe for social theorizing. Reproductive technologies,
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Introduction
organ transplantation or the use of stem cells and genetic engineering offer further, dramatic examples where social scientists and humanists (SSH) have much to offer the perspectives of biomedicine. The aim of this volume is continue to engage with the biomedical paradigm, a process that has yielded two previous volumes.5 As David Armstrong has noted the relationship between biomedicine and other ways of knowing takes many forms. Firstly, SSH perspectives can be deployed to provide contextual information and conceptual support for biomedical interpretations. Secondly, SSH can define its own areas of analysis but still work within a largely biomedical paradigm. Thirdly, SSH can take biomedicine as its subject area, analyzing professional power or the increasing ‘medicalization’ of aspects of social life. Fourthly, there are those analyses that seek to situate biomedicine in its historical and cultural place, highlighting that it is only one interpretive framework and that others have existed and continue to exist. The papers in this volume take a variety of approaches and have different relationships with the biomedical paradigm. Taken together, all of the authors are attempting to find ways to add SSH perspectives to biomedical understandings or even force us to rethink the fundamental precepts of biomedicine. Many of the authors also share an interest in finding ways through which SSH perspectives could be implemented into the various fields of clinical practice. This is, then, part of a project that seeks to make incursions into the territory of biomedicine and, in some cases, to claim that territory as a contested geography, in which biomedicine and SSH perspectives are equally legitimate. In the opening essay, Peter Twohig offers a brief summary of the Making Sense of Health Illness and Disease conference project and draws from the disease experiences of Jacqueline du Pré, Kathleen Chesto and an informant he calls Charles to reveal the insights that are contained in individual’s stories of illness. In the second essay of the first section, Tomas Śpiewak examines the last self-portrait of the great Polish artist Stanislaw Wyspiański’s to critically examine the myths and metaphors of syphilis. The papers in the second part of this volume use the main characteristics and underlying assumptions of biomedicine as their starting point. Some authors understand biomedicine as a cultural system, showing a specific cultural basis and being determined by its surrounding cultural context. Biomedicine is the dominant organizational framework of western medicine and, as such, is rooted in a specific view of health, illness and disease that is deeply entrenched by social values and morals, as also the authors in part three aptly demonstrate. These authors show how this affects perspectives on individuals and their bodies, definitions of health, illness and disease categories, and treatment options. Not surprisingly, such considerations also shape the relationship between health care providers and patients, and the authors in part four are specifically concerned with these relationships. These authors also explore the ethical and outcome concerns of client-professional relationship.
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In his essay on aetiology, James Davies highlights the on-going importance of ‘first causes’ in many aspects of biomedicine and why this reductionism serves the interests of certain forms of practice. He pays close attention to the way in which scientific credibility shape respectability of particular healing traditions and how, in the absence of such credibility, other devices are deployed to fill these gaps. Matthew McGrattan’s essay critically examines the broad literature on the ‘social construction’ of disease. While he does not reject the utility of such a theoretical model, he uses a careful philosophical analysis to question the far reaching claims of social constructivists, as they move from particular cases to general conclusions. Katherine Angel’s exploration of female sexual dysfunction and its medicalisation in contemporary clinical medicine builds on the insights of the first two papers in this section. Angel illustrates how biomedicine can reduce complex interconnections to monocausal explanatory models. Furthermore, she draws attention to the especially harmful connection of biomedicine with economic interests in the context of the “creation” of new diseases. New illnesses are on the way – illnesses deeply rooted in and affected by the cultural values of western modern societies. They point to problems, shortcomings and conflicts in western modern society and should make us ponder how some conditions come to be defined and subsequently pathologised. In the last paper of this section, Peter J. Schulz deals with the communication of diagnostic information by doctors to patients in the consultation, through his use of speech act theories in his analysis of doctor-patient-consultations. Despite recent efforts to see the patient as partner – and to reflect that endeavour in the communication style between medical professional and patient – there still is (and will be) a hierarchical imbalance between the two due to the professional’s medical knowledge and a state of limited self autonomy (caused by the state of being sick) by the patient. Schulz raises important questions that arise from new communication strategies and how they have the potential to transform the doctor-patient relationship. In spite of its common roots, intercultural comparative studies show that biomedicine is not a monolithic system, but instead features cultural variants in its diverse local settings. More specifically, one should refer to the cultures of biomedicine instead of just biomedicine per se. Looking at the regional practices of biomedicine and exploring their theoretical and historical roots contests the biomedical claim of objectivity and “universal truth.” Instead, such analyses reveal the cultural determination of biomedicine, of medical practice and – intimately connected with that – of conceptions of the body, life, health and illness and ultimately death. All medical systems have an empirical base and focus their action on the physiological, material body – despite the fact that non-western medical systems make a larger space for spiritual aspects of healing. Yet, in these cases, too, the starting point is still quite often a problem with the material body. To focus on the cultural dimension of
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Introduction
medicine, medical anthropologist Byron Good states, is not to deny its effects on the biophysiological plain. Rather, it shows that multiple realms – including the biological, the social and the cultural – interact.1 Acknowledging the interdependence between culture and the physiological realm is not an easy endeavour, as David B. Morris emphasizes: An understanding of the interrelations between culture and biology will require a tolerance for ambiguities far greater than any medical school today is likely to test for and certify in its graduates. It also demands an awareness of unusual patterns where traditional observers see mere randomness or a confusion of unconnected data.2 Some of these issues are address in the essays in the third part of the volume. Betania Allen focuses on the nosological system and symbolic efficacy. She shows the various ways of making sense of a disease and explores the element of choice in a socio-cultural context that offers various and also contradictory modes of explanation. Allen’s case study of Mexico demonstrates that it is important examine options of choice and making sense, if we are to better understand issues of “compliance.” In her essay drawn from research in Kerala, India, Bindulakshmi examines how the diagnosis of mental illness can be used as a means of social resistance and to shape social space. At the same time, these diagnoses can be used as a means to discipline behaviours that are not sanctioned (and are therefore defined as “deviant”) and therefore serve to regulate the lives and bodies of women. Bindulakshmi’s essay helps us to understand the experience of women and the role of professionals in Kerala. Aaron Goodfellow’s essay “Critical Excess: Sex, Drugs, Intervention” analyzes the narratives of participants in a drug treatment centre in the United States. The compelling narratives of Stacy, Reanna and Moses reveal the narrow scope of interventions predicated on the belief that addictions reside within individual bodies, without a full consideration of the ways in which lived experience interact both with institutions (such as a rehabilitation program) and multiple ethical discourse. Bringing together the findings of two research projects from two different countries Rich, Harjunen and Evans point to the danger the discourse of “healthism” entails for young women and further social implications the ideal body involved. Their analysis of school-based health education programs draws attention to the role of schools as “transmitters of social inequality through the construction of ‘health.’” The authors show how these programs actually generate pressure for the young women to conform to idealized versions of the body.
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The success of biomedicine, Horacio Fabrega states, plays an important role in changing the wishes and expectations of individuals about this aspect of health care.3 Growing worries and fears concerning ones health lead to a more frequent demand for biomedical services and therapies and also to an attitude of expectation for cure and treatment. At the same time, the development of biomedicine also resulted in a loss of subjectivity and meaning in illness. With the rise of positivistic-oriented medicine, the focus shifted from the subjective description of illnesses by the suffering individual to the search for objective medical facts. Through this transition, the patient’s body was transformed into a passive object for medical inquiry. The subjective view of the patient has become more and more subordinate to the dominant biomedical view. In medical diagnosis, the patient’s illness narrative is translated by the doctor into a series of objective salient facts, which become signs of a pathological process. Medical anthropologist Arthur Kleinman explains that, for this translation to occur, illness as experience has to be decoded into the disease as biological pathology.4 There is no room for questions about the meaning of the illness for the individual. To counterbalance this process, sociocultural factors need to be taken further into consideration: both to make medicine effective in various cultural settings and to address ethical difficulties resulting from a clash of differing cultural norms. One strategy would be to give room and voice to the patient’s point of view and the subjective side of illness and disease. In the words of Morris: The social, cultural, and personal dimensions of illness must be understood through other means, and one neglected but useful resource is narrative. Narrative, we might say, constitutes a mode of understanding appropriate for situations too variable and too untidy for laboratory analysis. Narrative, we might say, constitutes a mode of understanding appropriate for situations too variable and too untidy for laboratory analysis.4 The final section of this book further contributes to this task. In her essay, Phillipa Spoel provides a case study of ‘informed choice’ in contemporary midwifery practice in Canada. Her analysis of the tensions inherent in the idea of informed choice, revealed through an explication of the underlying frameworks of choice, including consumerist notions, ideas of expertise or expert opinion, and the very notion of “value-neutral biomedical information.” Her careful arguments raise the question of whether ‘informed choice’ should be a guiding principle for midwifery and, by implication, other areas of clinical care. Stephen Neff reviews a series of empirical studies on hope in his essay “Towards a Concept of Hope: A Functional Reconceptualization.” He argues that hope, while subjective, is best understood as a relational concept. This insight transcends the perceived idiosyncratic nature of hope and demands some
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Introduction
consideration of the prior experience of individuals, the relationships embedded in those experiences, and ideas about the future. In his essay, Ian Tucker builds upon the large literature that explores ideas of embodiment. Tucker explores the everyday management strategies of persons diagnosed as ‘schizophrenic,’ including individual practices, levels of activity and their use of social space. The explicit focus of his analysis concerns medication use and the embodied practices that govern their use. Tucker provides insight into the relationship between the experiences of the individual and the biomedical framework of contemporary pharmacotherapy, using what he calls “user-centred research.” Kath McDonald provides an empirical study of persons with cystic fibrosis who are waiting for lung transplants. Participants in her research included individuals who had experienced transplants, those who were still waiting, as well as the perspectives of caregivers. The themes generated through her analysis included notions of displacement, disorder, of living ‘life in limbo’ and of readjustment to wellness. Her conclusion is that a focus on the ‘lived experience’ of persons with cystic fibrosis provides health care providers with greater awareness and, perhaps, form a kind of research scaffolding from which more ‘sensitive and supportive’ programs can be constructed. Such is the hope of researchers of all kinds. The final essay in this volume examines two ‘medical disasters’ in New Zealand concerning cervical screening. Judith Macdonald combines an analysis of textual sources with qualitative interviews. Her analysis of different voices, including those of health professionals, women, and different cultural groups, cogently illustrate the ways in which gender, power and voice intersect to generate both meaning and silence. Cumulatively, the essays in this volume extend the earlier efforts of an interdisciplinary conference project that began in 2002. The Making Sense of Health, Illness and Disease conference has brought together hundreds of scholars from around the world. It aspires to generate new conversations and to promote interdisciplinary dialogue. The selections in this volume are representative of the wide array of papers presented at the conference. All of the papers herein were selected for inclusion by the editors, in consultation with the delegates and with an international steering committee. We hope that they convey something of the flavour of the conference at which they were first presented but, more importantly, that they will become a resource for other researchers interested in exploring health, illness and disease.
Notes 1
David Armstrong, “Social Theorizing About Health and Illness,” in Gary L. Albrecht, Ray Fitzpatrick and Susan C. Scrimshaw, Handbook of Social Studies in Health and Medicine, Thousand Oaks, Sage, 2003, 24.
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2
Ibid., 25. Aaron Goodfellow, “Critical Excess: Sex, Drugs, Intervention,” pp. 161178 in this volume. 4 William Osler, The Old Humanities and the New Science (Boston: Houghton Mifflin, 1920), 26. 5 Peter L. Twohig and Vera Kalitzkus, eds. Making Sense of Health, Illness and Disease (Amsterdam: Rodopi, 2004) and Twohig and Kalitzkus, eds., Interdisciplinary Perspectives on Health, Illness and Disease (Amsterdam: Rodopi, 2004). 6 Armstrong, “Social Theorizing About Health and Illness.” 1 Byron Good, Medicine, Rationality and Experience: An Anthropological Perspective (Cambridge: Cambridge University Press, 1994), 53). 2 David B. Morris, Illness and Culture in the Postmodern Age (Berkeley: University of California Press, 2000 [1998]), 18. 3 Horacio Fabrega, “Medical Validity in Eastern and Western Traditions,” in Perspectives in Biology and Medicine (Vol. 45, 3 (Summer 2002), 407. 4 Arthur Kleinman, Writing at the Margin. Discourse Between Anthropology and Medicine (Berkeley: University of California Press, 1995. 5 Morris, 1998: 89. 3
Bibliography Armstrong, David. “Social Theorizing About Health and Illness,” in Gary L. Albrecht, Ray Fitzpatrick and Susan C. Scrimshaw, Handbook of Social Studies in Health and Medicine, Thousand Oaks, Sage, 2003: 24-35. Fabrega, Horacio. “Medical Validity in Eastern and Western Traditions.” Perspectives in Biology and Medicine, Vol. 45, 3, (Summer 2002): 295415. Good, Byron. Medicine, Rationality and Experience: An Anthropological Perspective. Cambridge: Cambridge University Press, 1994. Kleinman, Arthur. Writing at the Margin: Discourse Between Anthropology and Medicine. Berkeley: University of California Press, 1995. Morris, David B. Illness and Culture in the Postmodern Age. Berkeley: University of California Press, 2000 [1998].
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Acknowledgments The editors would like to thank everyone who contributed to this volume in various ways. We would especially like to thank the authors for their cooperation and patience, and the conference participants who make this conference a success each year. We acknowledge with gratitude the inspiration of Rob Fisher, who initiated this conference in 2002. It has been such a fruitful arena for discussion and the co-editors, authors and participants have all profited enormously.
Part 1
Humanist, Social Science and Interdisciplinary Perspectives on Health, Illness and Disease
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The Musician, the Diarist and the Construction Worker: Interdisciplinary Perspectives on Health, Illness and Disease Peter L. Twohig 1.
Introduction
This is the third Making Sense of Health, Illness and Disease conference and it is clear that the discussions have been highly productive, with new, international collaborations emerging from earlier conferences (including both publications and new research projects1), interdisciplinary dialogue and, hopefully, new insights. This conference is intended to initiate and renew conversations about health, illness and disease, analyses of the relationships between patients and health care providers, and the interaction between ideas of treatment and those of healing. Fundamentally, this conference has attempted to bridge the worldviews that prevail within the social sciences and humanities (SSH) and those of biomedicine and clinical practice. In 2004, we returned to St. Catherine’s College, Oxford University, the site of the first conference in 2002. As the opening address for the conference, I thought it would be useful to highlight why health is well-suited to the multiple perspectives that have characterized this conference project. I hope to achieve this through presenting a few brief vignettes, including an example drawn from my current research on diabetes and hypertension. Finally, I want to conclude with some words about interdisciplinary perspectives on health, illness and disease. 2.
The Musician
In 2003, “Making Sense of Health Illness and Disease” convened at St Hilda’s College and, more specifically, in the Jacqueline du Pré building. Du Pré was the brilliant cellist whose career was cut short because of her own encounter with multiple sclerosis. Her story is quite well known and it need not be fully recounted here. For a long time, her illness was imperceptible to everyone except her. As Carol Easton tells it, du Pré looked well and felt well much of the time but her energy would suddenly dissipate. She would have occasional symptoms, including tingling in her extremities and non-specific aches and pains, which eventually affected her ability to perform.2 Her sister Hilary recounted that in January 1973, just before du Pré turned 28, she performed in Toronto, Ontario, to warm but not enthusiastic reviews. She performed in New York on 25 January and, according to her sister’s account, the “critics complained of her self-indulgent playing, her rasping tone, and that she
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The Musician, the Diarist and the Construction Worker
often missed notes.” Du Pré sought the advice of physicians and, according to Hilary, they were “anything but helpful. She was told that she was suffering from ‘adolescent trauma’ (at twenty-eight!), which was a cruel diagnosis as she was made to think she was making a fuss about nothing.”3 And then there were the rumours. As her health deteriorated, Jacqueline du Pré was forced to take a sabbatical from performing and recording. Such interludes are not typical for internationally acclaimed artists, who have a short half-life, and her pause prompted cruel speculation. Du Pré was said to be neurotic or perhaps she was having a nervous breakdown. Others suggested that her marriage to Daniel Barenboim was failing or that she had a drinking problem. As Easton notes, “Because she looked well, it was easy to interpret her weakness and fatigue as laziness or depression.”4 Du Pré’s experience was different only because of her enormous public profile, which she ultimately used to good effect. Du Pré never wrote about her illness but she did publicly speak about it. She made her first public appearance in a wheelchair in October 1975, with acclaimed dancer Margot Fonteyn helping her into the Royal Opera House. She followed this inaugural, dramatic appearance with the launch of Crack, a young people’s section within the Multiple Sclerosis Society, at the Royal Festival Hall in London in February 1976. On that august stage, the site of many stirring musical performances, du Pré delivered a speech in which she argued that “life can start from a wheelchair” and told the audience of her new devotion to teaching and her desire to rethink her life. Du Pré used her illness encounter to highlight the need for personal growth, understanding and the need for research into multiple sclerosis in the UK.5 For most of us, our engagement with health, illness and disease is a more personal and private encounter. Chronic diseases such as multiple sclerosis present an opportunity to explore in detail an individual’s encounter with illness. Narrative research, such as that conducted by Ian Robinson, provides one lens through which to understand multiple sclerosis.6 Another lens into the world of the encounter with illness is through autobiographical accounts (or pathographies). These offer insight into suffering and social isolation, to be sure, but may also disrupt our easy assumptions and reveal how people who have chronic illness find positive experiences or renewed perspectives on life. The British Conservative writer and reactionary G.K. Chesterton wrote in the early twentieth century that we see great things from the valley, but only small things from the peak.7 Perhaps illness leads us to a valley but there we can encounter many acts of kindness, friendship, love, even healing. A privileged few can even see great things from the valley of illness. Certainly, this was the case for the young poet Mattie Stepanek who, I noted on my journey here, died at Children’s National Medical Center in Washington, D.C., on 22 June 2004. He was 13. Stepanek had a
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rare form of muscular dystrophy called dysautonomic mitochondrial myopathy, which basically meant that the bodily functions many of us take for granted (body temperature, heart rate, digestion and breathing) did not always work for Mattie. He was predeceased by two brothers and a sister who had the same disease and his mother had the adult form. There is certainly sadness in this tale of young children enduring such a devastating illness. But, his obituary noted, “Mattie was upbeat, saying he didn’t fear death. His work was full of life, a quest for peace, hope and the inner voice he called a heartsong.” In fact, at the age of 13, Stepanek had published five books, all of them having “heartsong” in the title. The publisher of his first book printed 200 copies but it eventually sold more than 500,000 copies.8 Stepanek, I would submit, saw great things from the valley of his illness. 3.
The Diarist
But we must guard against romanticizing suffering and the encounter with illness. Kathleen Chesto entitled her published journal Risking Hope: Fragile Faith in the Healing Process.9 Risk and fragility are strong themes in her journal, which she began writing from her first night in intensive care at the Yale-New Haven Hospital in April 1986. Her book is arranged in four sections – crisis, denial, depression and letting go. In the introduction, Chesto suggests that hers “is a story of healing. Oh not the spectacular kind of healing for which we usually reserve the title miracle … but it is healing, nonetheless.”10 She describes the “nonchalance”11 of the physician in the face of her increasing paralysis, which squares with Jacqueline du Pré’s experience. This is a text filled with both humour and pathos. One of the first entries in the diary (20 April 1986) reads: “It is not losing my legs or arms that fills me with fear so intangible that I can taste it. Tonight, in the ICU twilight, I am afraid of losing myself.”12 Fear of losing one’s self to one’s disease is a strong theme in the texts of illness. In Chesto’s case, it is manifested it an encounter with her friend Ellie. In an entry tellingly entitled “Woman?” (7 June), she notes how she and Ellie went to have her colours done and how they laughed like teenagers. “Is it possible to feel like a woman again, despite the canes and the chair?” she asks.13 Jacqueline du Pré was even more stark. Her sister recalled that “As Jackie became more incapacitated she took an even greater delight in shocking people. Many a male visitor would be alarmed by the greeting, ‘Fuck me.’ Some were able to deal with it and turn it into a joke, while others were frightened away. Maybe it was Jackie’s way of saying she was still a woman and had not lost her sexuality.”14 The illness experience, it is clear, is deeply gendered. Then there are the demands of adjustment. Chesto’s entry for 18 May 1986 reads: “They say I have adjusted well to the canes, the mobility
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The Musician, the Diarist and the Construction Worker
device, the occasional catheters. They say I have accepted the disease and its limitations beautifully. If I have adjusted so well and accepted so much, then tell me, why am I sitting on the ground among the crocus stumps, crying?”15 Another entry “Please Help Me”, written a month later (10 June), begins “My other friends have all deserted me. No one calls or visits or even drops a card. Their lives have moved on while mine has come to a grinding halt. I think I make them uncomfortable … I know my illness is difficult for you, but it’s not a picnic for me either. I can’t do it alone.”16 The social isolation captured in these descriptions is apparent. Illness reshapes the encounter with the other. Chesto recounts how a saleswoman “droned on in that tone I have heard far too often since being confined to a wheelchair. … Beside me, nine-year-old Liz [her daughter] was growing increasingly more fidgety. She suddenly planted her small body firmly between the saleswoman and me. Hands on her hips, a mounting fury in her voice, she said loudly: “My Mom’s not stupid! She’s just crippled!”17 Patronizing salespeople are one matter but an entry for 5 May 1987, entitled “Advice,” offers another lens into the changing social relationships of MS sufferers. It is worth noting that this entry is in the Denial section of the book. It reads: “why are there so many people within my immediate acquaintance who are absolutely certain that they know the cause, the cure, or both? I have been badgered with books and tapes, diets and therapies, and a score of armchair psychiatrists who feel perfectly free to analyze every word that comes out of my mouth. … there is something about illness, or depression, or both, that makes us terribly vulnerable. Family and friends feel it is not only their right, but their duty, to tell us how to live.” She describes the pseudo-psychiatrists as the “worst” and the dieters as “the most intrusive.”18 She then declares that if she had followed the unwelcome advice of the many, her tombstone would have to be engraved with the following epitaph: “Of Kathy, let these words suffice: Lived with MS, died from advice.”19 A slightly different account of this is developed by Miriam Ottenberg, in The Pursuit of Hope.20 She won the Pulitzer Prize in 1960 for exposing used-car frauds. She writes: “Victims fall regularly for what one friend calls the “peanut butter syndrome.” ‘If somebody eats peanut butter and it coincides with an upcycle in his disease, he’s going to say peanut butter is a cure for MS.’”21 The illness sufferer is inundated with advice, prescriptions for living, and various explanations for their disease and for living well. Their world is, in a sense, a public space, in which many people participate, though this participation is not always welcomed. The link between individual’s conceptualizations of their life and illness, the advice of family, friends, or even strangers, and their encounters with health care providers (formal or informal), remains a
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matter for exploration and research. There is now a growing body of research that suggests that educational efforts that fit with people's "lay epidemiology" and beliefs about their disease experience are more likely to lead to behaviour change.22 For example, Airhihenbuwa et al. have noted the limitations of health education approaches that attempt to identify and address knowledge "deficiencies" in efforts to prevent HIV/AIDS, without regard to the beliefs of the intended audience.23 Others argue that approaches that consider patient knowledge and belief are likely to be more successful than the "tyranny of health promotion" described by Becker.24 This is what underpins a research project that I am currently engaged in on diabetes and hypertension, and to which I now wish to turn. 4.
Diabetes and Hypertension
A. The Clinical Issue Type 2 diabetes is a large and growing health issue for Canada and for other countries. People with diabetes have a greater incidence of renal disease, eye disease (retinopathy), cardiovascular disease, and cerebrovascular disease than the general population and epidemiological evidence suggests that relative hyperglycaemia accounts for only part of this risk.25 For some time it has been known that elevated blood pressure, recognized as a major risk factor for stroke and myocardial infarction, is also more common among people with type 2 diabetes than in the general population.26 The risk of myocardial infarction, for example, is two to six times higher among persons with type 2 diabetes than among the general population.27 The UK Prospective Diabetes Study (UKPDS) found a high prevalence of hypertension (39%), and began to explore the question of "tight" blood pressure control in 1987, concluding a decade later that tight blood pressure control (<150/<85 mmHG) was not only clinically beneficial but also cost-effective.28 Recent Canadian and American guidelines and further research from UKPDS recommend even lower targets.29 Other research has demonstrated that improved blood pressure control among persons with diabetes reduces the risk of cardiovascular complication30 and nephropathy,31 while even more recent studies suggest the importance of early assessment of blood pressure among persons with diabetes.32 Adherence to recommendations, including those for blood pressure control, is considered to be essential to prevent disease complications such as cardiovascular, cerebrovascular, ocular or renal disease. Nevertheless, in the early 1990s more than half of people with diabetes33 and a similar proportion of those with hypertension34 did not adhere to such recommendations. Another study found that 40-50% of patients with hypertension withdrew from treatment programs before one
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The Musician, the Diarist and the Construction Worker
year passed, and of those who remained, only 20-30% adhered to the prescribed regimens.35 More recent work by Joffres, et al. concludes that "we have not made any progress on the control of hypertension, and that we might indeed be losing some ground."36 Data from Nova Scotia37 and elsewhere suggest that gaps remain.38 While responsibility for nonadherence is traditionally assigned to patients, health care providers now recognize the complexity of treatment decisions. For people with diabetes, following the recommendations of health care providers is a complex process. Elliot, et al. (2000) identified six broad categories of factors that influence patient adherence, including practical and logistical issues, patient knowledge, perception of health benefits, social support, communication with health care providers, and the complexity of the treatment regimen.39 One recent study found that people with both diabetes and hypertension were "bombarded" with warnings about future health complications. Patients heard messages from health care providers, friends and family or detected "internal" warnings based on subjective assessments of their own health.40 Messages about evidence and risk are weighed against the subjective disease experience, willingness to change lifestyle behaviours, or myriad other factors. It is into this complex web that I wanted to step, specifically to understand how people with diabetes and high blood pressure made decisions about risks, about changes to their diet, and a range of other topics. B. Charles Charles is a 51 year old man, who lives in a small town in Nova Scotia, Canada. He has both diabetes and hypertension. When I interviewed him, he had lost twenty pounds in about six weeks through a combination of diet and exercise. He only recently discovered that he had diabetes – about six months before I interviewed him – and he was told that he was on the “borderline” and that, if he was diligent, he would be able to achieve good glycaemic control through diet and exercise. Charles takes his diabetes and his high blood pressure seriously, even though both are well controlled. Early in our interview, he said “I don’t know why I’m so conscious but I am now … I have no idea why and what happened.” When I asked Charles how he prioritized these issues, he said he was more concerned with his blood pressure, “Cause it’s a silent killer.” He developed his assessment a little further: But uh I’m scared it’s going to go up and … something is going to let go somewhere in my body or heart or but the diabetes I know of it, I don’t really fully understand the whole thing about it but I know through people [who] had it [that they] lost legs, limbs, and toes and eyesight and I… it doesn’t
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scare me like [so] that I’m really worried about it. But [because] I’m on the pressure and then so okay I’ll eat all the good stuff hopefully and with the diabetes it’s gonna come down and I’m hoping it is … Friends of mine who had [diabetes] young, died with it, lost legs, like I said toes and that’s not ever gonna happen to me … Charles was highly motivated to make changes in his life although at several points through the interview, he lit cigarettes. He did indicate that he would quit smoking after he lost weight and had previously stopped smoking for two months. As he put it “it’s get rid of my weight and then I’ll feel good about myself and yeah, the cigarettes are gonna be gone.” Here we gain some insight into body image for this participant, an element that he developed more fully later in the interview, together with some insight into the important role of social support, in this case the participant’s partner. Well, when I seen that I start putting clothes on and start going from a 38 [waist size, measured in inches] to a 40 then a 42 forty-two … and then going to Dominican [on vacation] and last year and my wife said your face looks like its a blowfish – I started laughing go away I don’t feel big I don’t look big so I was standing there in the airport I was the only one there sweating soaking with sweat not doing nothing just waiting in a line and I said oh God I feel like I feel like I’m guilty or something I’m just sweating here bad and I said this is not going to happen again …I’ll never do this again. I’ve got to do something when I get home but I didn’t so come January, my birthday was the 18th, coming off January so she said why don’t we start walking and I started and I said okay so I got into walking and she said why don’t you eat cereal …” Charles was, at age 51, still young. He was unable to work due to an injury he suffered in June 2000, four years before I interviewed him. I wanted to understand why he was willing to make some changes. At first, he was not able to offer a clear explanation but it became apparent as the interview developed. I started working when I was 17 in construction and I worked two years before that, I started at 15, I started working and then I said that’s all I know is
18
The Musician, the Diarist and the Construction Worker construction well what am I going to do. What are they going to do for me? I said Charles, then okay then there’s nothing you can do then, there’s nothing you can do … I had a lot stress over that way and only for Dr. R. helping me and he was very good to me and we’ll get through it he said Charles, just keep doing what you have to do and finally it will all come together. And once that came together, and it only came together about six month’s now after the initial feedback from [Worker’s Compensation] and the news that I did get my wages lost, you did have permanent medical injuries on both shoulders and far as they are concerned you are not going back to construction …
For this person, settling his compensation claim and the financial security this offered, was a key component in initiating change. Suddenly, he could see a future for himself. He continued: it was like the waiting game is over, I know where I stand and what I have to work with the rest of my life, my wife and I, and I said well okay then I’m only 51 and he kinda give me a little lecture about my weight and what’s going on and he said C. do you want to be around awhile and I said yeah and start showing me he said look all this is wrong with ya if you continue doing what you’re doing you’re gonna have to do something so I said well okay that’s one part got over with the financial which I know I’m alright and health wise I said well it is a good time to get over this … Although his broad financial picture was secured through the settling of his compensation claim, this was a person who still had some significant issues around money. Late in the interview, I asked Charles specifically about the issue of cost. By this point, we had shared a few laughs and there was a good rapport between us. So I asked about the cost of medications. PT: … is that an issue for you? C: Yes, I gotta pay for everything – I have no medical PT: You have no medical so that’s an issue for right now and it could be an issue that grows?
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C: It could be yeah very bad. You’re talking hundreds of dollars for medication for me and my wife she’s on medications and that’s sometimes it hurts. (long, emotional pause). There is no other way around it, I can’t get a medical, once I am out of my union they cut it off and when my job’s over, I lose medical, I lose everything PT: So are high blood pressure medications, the one’s that you are on … are they expensive? … C: They are! Dr. R. gives me some [free] samples to hold me over for a little while to see if we could get it controlled and if they don’t work then we’ll try some other thing and that works and then we will try to get you something that’s going to be affordable and I know my wife’s are four hundred and some dollars for a month … I said I can’t afford that kind of money but he said we’ll try something and I said okay just try it but I know if I lose the weight and everything else, the pressure is going down, I know it’s gonna go down it has to … I’m praying that’s gonna save me that way as far as medical wise … This example illustrates that there are no borders between the world of health and the material reality of patients. For health care providers dealing with diabetes, the cost of drugs or of supplies such as testing strips is frequently considered. But the description provided by Charles goes well beyond this. For this person, his entire future was bound up with financial uncertainty and it was not until this uncertainty was removed that he began to make significant changes in his life. Individuals do not compartmentalize their life, instead taking a broad view – a view that lends itself to interdisciplinary inquiry and for the social theorizing provided by social science and humanities perspectives discussed in the introduction to this volume. For Charles, several elements were at work. Firstly, there was the fairly recent diagnosis of diabetes, though this was a minor element in his own description. After all, he did not place much stock in the experience of his friends who were experiencing many of the complications of diabetes. He was more concerned that he would have an event because of his high blood pressure but this was never really developed by the participant. For this individual, newly diagnosed with diabetes, the major issues were those of finances. It is clear from a close reading of this text that the major element was settling his worker’s compensation claim and the future that that indicated. And, specifically related to his clinical conditions, the cost of medications was a large concern for this individual.
20 5.
The Musician, the Diarist and the Construction Worker Conclusion: Interdisciplinary Perspectives on Health, Illness and Disease
So far, I have developed a few vignettes in the hope that they reveal something about the varying nature of responses to illness, to diagnosis, to prognosis. Jacqueline du Pré, the musician, never wrote about her own illness but used her social status and network to initiate positive changes for those with multiple sclerosis in the UK and beyond. Kathleen Chesto, the diarist, offers us a rich and highly personal account of her illness, which is filled with equal parts of humour, triumph, tragedy and outrage. To these two well-known and public figures, I would like to add Charles. A man who worked in construction and earned an honest living for thirty years. His story offers us other kinds of insights. He indicates the complex matrix that guides decisions to change one’s life and the worries of the future. The stories of the musician, the diarist and the construction worker open up new paths to understanding. And this takes me to my final point; the need for interdisciplinary perspectives on health, illness and disease. The famous Canadian author Robertson Davies, in the Gillman Lecture delivered to Johns Hopkins Medical School on 18 November 1984, made the distinction between knowledge and wisdom.41 He used the image of the caduceus, familiar to most of us as the symbol of medicine, with two serpents entwined on the staff. Some will recall that the mythological story of the caduceus is that the serpents were fighting and were pacified only when Hermes placed the staff between them. Davies used this image as a metaphor for knowledge and wisdom. Though not necessarily opponents, they do need to be reconciled and brought into some kind of relationship with one another. Such is the task of interdisciplinarity. Knowledge is earned through education and study and, as such. Knowledge provides the capacity to help through building particular skills, often described as “competencies” by health care professions. For example, physicians need to know the current evidence, to provide a basis for appropriate clinical decision making. Wisdom is different, according to Davies. It comes from within and offers the health care provider a link with the world of the patient. Commenting on Wisdom, Davies wrote: it is what makes [the physician] look not at the disease, but at the bearer of the disease. It is what creates the link that unites the healer with [the] patient, and the exercise of which makes … a true healer, a true child of Hermes. It is Wisdom that tells the physician how to make the patient a partner in his own cure. Instead of calling them
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Knowledge and Wisdom, let us call them Science and Humanism. The connection between knowledge and wisdom, or science and humanism, remind us that the world of the patient and that of the provider are not really separate spheres but are inextricably linked. One is not bound up in rational science, while the remains rooted in emotions or values. Such a perspective – embedded in social science and humanities (SSH) perspectives on health, illness and disease – helps us to bridge the world of the patient and the health care provider. In a famous essay, C.P. Snow distinguished between the two cultures of the academy, the culture of science (and here I would include medicine) and the culture of the humanities.42 Traditionally, science and medicine have enjoyed legitimacy, status, funding and power within the modern university. While there is greater room for SSH perspectives on biomedicine, we would do well to remember the relationships delineated by David Armstrong and recounted in the introduction. It is reasonable to ask what proportion of the seemingly plentiful resources now devoted to SSH perspectives on health, illness and disease are devoted to the foundational research of exploring biomedicine as one system of knowledge among many (and one that can be located in historically and culturally specific terms). To borrow a familiar motif, it is not simply enough to ‘add SSH perspectives to biomedicine and stir.’ Interdisciplinary perspectives take many forms. It is possible, for example, to construct interdisciplinary research or clinical teams and still operate only within the biomedical paradigm. In the end, we must engage with the questions: What kind of interdisciplinarity are we discussing and what are we hoping to achieve through this interdisciplinarity? Such questions are always worth considering – we should never simply assume that an interdisciplinary research project will yield fresher insights or new perspectives but, instead, always be critically engaged with our own project. But to my mind, the answer is that clinical decisions must also consider patient and societal values, if they are to be useful. Complex decisions, such as when to seek care or to initiate a new medication must be guided by a broad and deep understanding of patient values. These values are shaped by culture, media, religion, history, and a range of other factors. And, finally, if clinical practice is to achieve its highest professional form, it must engage with these broader issues. I would argue that interdisciplinary perspectives – from within biomedicine and outside its borders – are best able to expand the debate and introduce some of these values and material realties to clinical decision making. After all, many decisions cannot be based solely on treatment protocols, algorithms, or understandings basic anatomy, physiology or pharmacology. Instead,
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The Musician, the Diarist and the Construction Worker
decisions about health, illness, disease and treatment are fundamentally about human values. This brings me to my last point. I have already suggested that if clinical practice is to achieve its highest professional form, it must do so through an engagement with the broader issues and values of patients. I also believe that if interdisciplinarity is to achieve its highest professional form, it is not enough to merely include other disciplines at the borderlands, to expand the scope of inquiry without fundamentally allowing this to change the assumptions and practices of clinical care. It is both comfortable and easy to add new perspectives to a project or a program, without permitting those new perspectives to change the research project or professional practice, respectively. Collectively, we need to aspire to be both discomfiting and subversive. International dialogue, such as that which occurs at the Making Sense of Health, Illness and Disease conference, is one element of this. When researchers from different countries and different intellectual traditions come together, the assumptions that prevail within a discipline or within a particular setting are revealed. The very process of bringing together researchers from different disciplines decentres some of the assumptions of a discipline, causes individuals to reflect on their own assumptions (and those of their discipline) and in this way enriches and invigorates scholarship. International dialogue also reveals that there is nothing ‘natural’ about the ways in which health services are organized or delivered. Working with researchers from many disciplines and different countries forces one to reconsider assumptions that underpin our research, even if we are unaware of those assumptions. I think that this, too, invigorates research and provides fresh insights on new and old questions alike. To achieve the full potential of the interdisciplinary project – our full potential – other perspectives must be incorporated at the metropolis, not simply added in at the borderlands. Only in this way can day-to-day practice be truly transformed and research by truly transformative.
Notes 1
Emma Rich and Hannele Harjunen encountered one another’s work at the second Making Sense of Health Illness and Disease conference and their research paper in this volume, coauthored with John Evans, is a result of that exchange. Bernie Warren and I met at the first Making Sense conference and, following that, worked together to develop a research proposal that was funded by Canada’s Social Sciences and Humanities Research Council. In addition to this volume, some of the papers that have been presented at previous conferences have been published in two edited collections Making Sense of Health, Illness and Disease (Rodopi 2004)
Peter L. Twohig
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and Interdisciplinary Perspectives on Health, Illness and Disease (Rodopi 2004). 2 Carol Easton, Jacqueline duPré: A Biography. London: Hodder & Stoughton, 1989, 159. 3 Hilary du Pré and Piers du Pré, A Genius in the Family : An Intimate Memoir of Jacqueliné du Pré. London : Vintage, 1998, 284. 4 Easton, 162-3. 5 du Pré and du Pré, 316-7. 6 Ian Robinson, “Personal Narratives, Social Careers and Medical Courses: Analysing Life Trajectories in Autobiographies of People with Multiple Sclerosis,” Social Science and Medicine 30, 11 (1990): 1173-1186 7 Chesterton (1874-1936) was English critic, essayist, novelist and poet and the quote appears in the Father Borwn story, “Hammer of God.” See Collins Concise Dictionary of Quotations (London: Collins, 1998). I would like to thank Dale Ahlquist, President of the American Chesterton Society for his help. 8 Globe and Mail (Toronto, Ontario, Canada), 4 June 2004. 9 Kathleen Chesto, Risking Hope: Fragile Faith in the Healing Process Kansas City: Sheed & Ward, 1990. 10 Chesto, v. 11 Chesto, vi. 12 Chesto, 5. 13 Chesto, 17. 14 du Pré and du Pré, 343. 15 Chesto, 12. 16 Chesto, 18. 17 Chesto, 29. 18 Chesto, 41-2. 19 Chesto, 43. 20 Miriam Ottenberg, The Pursuit of Hope. New York: Rawson, Wade Publishers, Inc., 1978. 21 Ottenberg, 21. 22 Trish Greenlagh, C Helman and AM Chowdhury, “Health beliefs and folk models of diabetes in British Bangladeshis: A qualitative study,” British Medical Journal, 316 (1998): 978-83. 23 C.O. Airhihenbuwa, R.J. DiClemente, G.M. Wingwood, A. Lowe, “HIV/AIDS education and prevention among African-Americans: A focus on culture,” AIDS Educ Prev,4 (1992): 267-76. 24 M.H. Becker, “The tyranny of health promotion,” Public Health Review, 14 (1986): 15-25. 25 See, for example, A.I. Adler, et al. “Association of systolic blood pressure with macrovascular and microvascular complications of type 2 diabetes (UKPDS): prospective observational study,” British Medical Journal, 321 (2000): 412-19; I.M. Stratton, et al. “Epidemiological association of glycaemia with macrovascular and microvascular
24
The Musician, the Diarist and the Construction Worker
complications of type 2 diabetes (UKPDS 25),” British Medical Journal, 321 (2000): 405-12; M. Hanefield, et al., “Risk factors for myocardial infarction and death in newly detected NIDDM: The diabetes intervention study, 11-year follow-up,” Diabetelogia, 39 (1996): 1577-83 and W.J. Elliot, et al., “Hypertension in patients with diabetes: Overcoming barriers to effective control,” Postgraduate medicine 107 (2000); 29-38. 26 W. Kannel and D. McGee, “Diabetes and cardiovascular disease. The Framingham study,” Journal of the American Medical Association, 241 (1979): 2035-38; J.A.E. Manson, et al. “A prospective study of maturityonset diabetes mellitus and risk of coronary heart disease and stroke in women,” Archives of Internal Medicine, 151 (1991): 1141-47. 27 C.D. Byrne and S.H. Wild, “Diabetes care needs evidence based interventions to reduce risk of vascular disease,” British Medical Journal, 320 (2000): 1554-55. 28 Adler, et al., “Association of systolic blood pressure,” 412-19; Stratton, et al., “Epidemiological association of glycaemia with macrovascular and micro-vascular complications,” 405-12; Hanefield, et al. “Risk factors for myocardial infarction and death,” 1577-83; Elliot, et al., “Hypertension in patients with diabetes,” 29-38; Kannel and McGee, “Diabetes and cardiovascular disease,” 2035-38; Manson, et al”. A prospective study of maturity-onset diabetes mellitus and risk of coronary heart disease and stroke in women,” 1141-47; Byrne and Wild, “Diabetes care needs evidence based interventions to reduce risk of vascular disease,” 1554-55; UK Prospective Diabetes Study Group, “Cost effectiveness analysis of improved blood pressure control in hypertensive patients with type 2 diabetes: UKPDS 40,” British Medical Journal, 317 (1998):.720-26. 29 S. Meltzer, et al., “1998 clinical practice guidelines for the management of diabetes in Canada,” Canadian Medical Association Journal, 159, 8 Suppl (1998): S1-S29; American Diabetes Association, “Treatment of Hypertension in Adults With Diabetes,” Diabetes Care, 25, Suppl 1 (2002): S71-S73. 30 L. Hansson, et al. “Effect of intensive blood-pressure lowering and lowdose aspirin in patients with hypertension: principal results of the hypertension optimal treatment (HOT) randomised trial,” Lancet, 351 (1998): 1755-62; J. Tuomilehto, et al. “Effect of calcium-channel blockade in older patients with diabetes and systolic hypertension,” New England Journal of Medicine, 320 (1999): 677-84; J.D. Curb, et al., “Effect of diuretic-based antihypertensive treatment on cardiovascular disease risk in older diabetic patients with isolated systolic hypertension,” Journal of the American Medical Association, 276 (1996): 1886-92. 31 E.J. Lewis, et al. “The effect of angiotensin-converting-enzyme inhibition on diabetic nephropathy,” New England Journal of Medicine, 329 (1993): 1456-62. 32 Adler, et al. “Association of systolic blood pressure,” 412-19.
Peter L. Twohig
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33
Karam JH. Diabetes mellitus, hypoglycemia, and lipoprotein disorders. In SA Schroeder, et al. (Eds). Current medical diagnosis and treatment (Norwalk: Appleton and Lange, 1999), pp. 900-945. 34 B.M. Massie and M. Sokolow, “Cardiovascular disease”. In SA Schroeder, et al. (Eds). Current medical diagnosis and treatment (Norwalk: Appleton and Lange, 1999), pp. 257-356. 35 P. Miller, R. Wikoff, and A. Hiatt, “Fishbein's model of reasoned action and compliance behaviour of hypertensive patients,” Nursing Research, 41 (1992): 104-109. 36 M.R. Joffres, et al., “Distribution of blood pressure and hypertension in Canada and the United States,” American Journal of Hypertension, 14 (2001): 1099-1105. 37 H.K. Wolf, et al., “Trends in the prevalence and treatment of hypertension in Halifax County from 1985 to 1995,” Canadian Medical Association Journal, 161 (1999): 699-704. 38 M.R. Joffres et. al., “Awareness, treatment and control of hypertension in Canada,” American Journal of Hypertension, 10 (1997): 1097-1102. 39 W.J. Elliot, et al., “Hypertension in patients with diabetes: Overcoming barriers to effective control,” Postgraduate medicine, 107 (2000): 29-38. 40 J. Weiss and S.A. Hutchinson, “Warnings about vulnerability in clients with diabetes and hypertension,” Qualitative Health Research, 10 (2000): 521-537. 41 This essay was published under the title “Can a Doctor be a Humanist?” in Robertson Davies, The Merry Heart: Selections 1980-1995 (Toronto: Douglas Gibson, 1996. 42 This essay was first presented at Cambridge University in May 1959. It was subsequently published under the title The Two Cultures and the Scientific Revolution (Cambridge: Cambridge University Press, 1959). An expanded version, responding to some of the debate his lecture prompted, was published as The Two Cultures: A Second Look (Cambridge: Cambridge University Press, 1964).
Bibliography Adler A.I., I.M. Stratton, H.A.W. Neil, J.S. Yudkin D.R. Matthews, C.A. Cull, et al. “Association of systolic blood pressure with macrovascular and microvascular complications of type 2 diabetes (UKPDS): prospective observational study.” British Medical Journal, 321 (2000): 412-19. Airhihenbuwa CO, DiClemente RJ, Wingwood GM, Lowe A. “HIV/AIDS education and prevention among African-Americans: A focus on culture.” AIDS Educ Prev 4 (1992): 267-76.
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American Diabetes Association. “Treatment of Hypertension in Adults With Diabetes.” Diabetes Care, 25 (2002): S71-S73. Becker, MH. The tyranny of health promotion. Public Health Review, 14 (1986): 15-25. Byrne C.D. and S.H. Wild. “Diabetes care needs evidence based interventions to reduce risk of vascular disease.” British Medical Journal, 320 (2000): 1554-55. Chesto, Kathleen. Risking Hope: Fragile Faith in the Healing Process Kansas City: Sheed & Ward, 1990. Curb, J.D., S.L. Pressel, J.A. Cutler, P. Savage, W.B. Applegate, H. Black, et al. “Effect of diuretic-based antihypertensive treatment on cardiovascular disease risk in older diabetic patients with isolated systolic hypertension.” Journal of the American Medical Association, 276 (1996): 1886-92. Davies, Robertson. The Merry Heart: Selections 1980-1995. Toronto: Douglas Gibson, 1996. du Pré, Hilary and Piers du Pré, A Genius in the Family : An Intimate Memoir of Jacqueliné du Pré. London : Vintage, 1998, 284. Easton, Carol. Jacqueline duPré: A Biography. London: Hodder & Stoughton, 1989. Elliot W.J., R. Maddy R, R. Toto, G. Bakris. “Hypertension in patients with diabetes: Overcoming barriers to effective control.” Postgraduate medicine, 107 (2000): 29-38. Elliot W.J., R. Maddy, R. Toto, and G. Bakris. “Hypertension in patients with diabetes: Overcoming barriers to effective control.” Postgraduate medicine, 107 (2000): 29-38. Greenlagh, Trish, C Helman and AM Chowdhury, “Health beliefs and folk models of diabetes in British Bangladeshis: A qualitative study,” British Medical Journal, 316 (1998): 978-83. Hanefield M., S. Fisher, U. Julius, J. Schulze, U. Schwanebeck, et al. “Risk factors for myocardial infarction and death in newly detected NIDDM: The diabetes intervention study, 11-year follow-up.” Diabetelogia, 39 (1996): 1577-83.
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Hansson, L, A. Zanchetti, S.G. Carruthers, B. Dahlöf, D. Elmfeldt, et al. “Effect of intensive blood-pressure lowering and low-dose aspirin in patients with hypertension: principal results of the hypertension optimal treatment (HOT) randomised trial.” Lancet, 351 (1998): 1755-62. Joffres M.R., P. Ghadirian, J.G. Fodor, A. Petrasovits, A. Chockalingham, P. Hamet. “Awareness, treatment and control of hypertension in Canada.” American Journal of Hypertension, 10 (1997): 1097-1102. Joffres, M.R., P. Hamet, D.R. MacLean, G. L'italien, and G. Fodor. “Distribution of blood pressure and hypertension in Canada and the United States.” American Journal of Hypertension, 14 (2001): 1099-1105. Kannel W. and D. McGee. “Diabetes and cardiovascular disease. The Framingham study.” Journal of the American Medical Association, 241 (1979): 2035-38. Karam JH. “Diabetes mellitus, hypoglycemia, and lipoprotein disorders.” In SA Schroeder, et al. (Eds). Current medical diagnosis and treatment. Norwalk: Appleton and Lange, pp. 900-945. Lewis E.J., L.G. Hunsicker, R.P. Bain, R.D. Rohde. “The effect of angiotensin-converting-enzyme inhibition on diabetic nephropathy.” New England Journal of Medicine, 329 (1993): 1456-62. Manson, J.A.E., G.A. Colditz, M.J. Stampfer, W.C. Willett, A.S. Krolewski, et al. “A prospective study of maturity-onset diabetes mellitus and risk of coronary heart disease and stroke in women.” Archives of Internal Medicine, 151 (1991): 1141-47. Massie, B.M. and M. Sokolow. “Cardiovascular disease.” In SA Schroeder, et al. (Eds). Current medical diagnosis and treatment. Norwalk: Appleton and Lange, pp. 257-356. Meltzer, S, L. Leiter, D. Daneman, H.C. Gerstein, D. Lau, et al. “1998 clinical practice guidelines for the management of diabetes in Canada.” Canadian Medical Association Journal, 159, 8 Suppl. (1998): S1-S29. Miller P., R. Wikoff and A. Hiatt. “Fishbein's model of reasoned action and compliance behaviour of hypertensive patients.” Nursing Research, 41 (1992): 104-109. Ottenberg, Miriam The Pursuit of Hope. New York: Rawson, Wade Publishers, Inc., 1978.
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Robinson, Ian. “Personal Narratives, Social Careers and Medical Courses: Analysing Life Trajectories in Autobiographies of People with Multiple Sclerosis.” Social Science and Medicine 30, 11 (1990): 1173-1186. Snow, C.P. The Two Cultures and the Scientific Revolution. Cambridge: Cambridge University Press, 1959. A Snow, C.P. The Two Cultures: A Second Look. Cambridge: Cambridge University Press, 1964. Stratton, I.M., A.I. Adler, H.A.W. Neil, D.R. Matthews, S.E. Manley, C.A. Cull, et al. “Epidemiological association of glycaemia with macrovascular and micro-vascular complications of type 2 diabetes (UKPDS 25).” British Medical Journal, 321 (2000): 405-12 Tuomilehto J., D. Rastenyte, W.H. Birkenhäger, L. Thijs, R. Antikainen, et al. “Effect of calcium-channel blockade in older patients with diabetes and systolic hypertension.” New England Journal of Medicine, 320 (1999): 677-84. Twohig, Peter L and Vera Kalitzkus, eds. Interdisciplinary Perspectives on Health, Illness and Disease Amsterdam: Rodopi, 2004. Twohig, Peter L and Vera Kalitzkus, eds. Making Sense of Health, Illness and Disease. Amsterdam: Rodopi, 2004. UK Prospective Diabetes Study Group. “Cost effectiveness analysis of improved blood pressure control in hypertensive patients with type 2 diabetes: UKPDS 40.” British Medical Journal, 317 (1998): 720-26. Weiss J., and S.A. Hutchinson. “Warnings about vulnerability in clients with diabetes and hypertension.” Qualitative Health Research, 10 (2000): 521-537. Wolf, H.K., P. Andreou, I.R. Bata, D.G. Comeau, R.D. Gregor, et al. “Trends in the prevalence and treatment of hypertension in Halifax County from 1985 to 1995.” Canadian Medical Association Journal, 161 (1999): 699-704.
Acknowledgments Portions of this paper were presented at a panel entitled “Health, the Humanities, and the Public Good” organized by Chris MacDonald,
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Department of Philosophy, Saint Mary’s University and the Atlantic Centre for Ethics. I would like to thank my co-panelists, Dr MacDonald and Dr Charles Weijer, for the opportunity to share some of this research. Other ideas were first presented at the School of Dramatic Arts, University of Windsor and Dr Bernie Warren and his students were most gracious. Research funding for this paper was provided by the Nova Scotia Health Research Foundation and by the Canada Research Chairs program.
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Stanisław Wyspiański (1869 – 1907): The Last Self-Portrait of the “Syphilitic Artist” Tomasz Śpiewak Abstract During the last years of his life, Stanislaw Wyspiański, one of the most important personas of the Young Poland movement (playwright, poet, painter, book designer), suffered from syphilis: a symbolic and paradigmatic disease of the fin de siècle culture. Despite the extensive research conducted on his creative output throughout the 20th century, this discourse almost completely neglects the textual and visual manifestations of syphilis that surface when examining the array of possible links between Wyspianski’s biography and the experience of his long-term illness. In this respect, one of the most important personas of Polish culture has remained its great, unrecognized “ailing Other.” By examining Wyspiański’s last self-portrait (1907) which presents the extreme distortion of the face, the paper attempts to situate and discuss this representation of the syphilitic body in the wider context of European depictions of this disease in the 19th century. Furthermore, I illuminate the misogynistic and excluding discourses, mythology and metaphors surrounding the disfiguring disease which have left their traces on Wyspiański’s work. It can be claimed only to some degree that the selfportrait follows the canonical patterns of representation of a syphilitic face: Hence, the underlying question of my text will concern the relation between the identity of the artist and the experience of the disease, i.e. the identification (or lack thereof) with the image of his own ailing body. Since painting became the primary area in which Wyspianski confronted his ailing condition – there are only scant traces of similar introspections in his written works – the paper also seeks to address the issue of artistic medium as it relates to illness. Keywords: syphilis and European culture at the turn of the 19th century; disease and the representation of the male body; disease and alienation; artistic expression; melancholy and depression 1.
Introduction
Stanislaw Wyspiański, one of the most interesting and versatile personas of the Young Poland movement and the father figure of Polish 20th century theatre, suffered for approximately ten years from syphilis, which he contracted from a prostitute while studying in Paris in 1894.
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Stanislaw Wyspiański (1869-1907)
Painter, pastellist, decorative artist, illustrator, writer, and theatre director, Wyspiański long experienced a sense of impending mortality though only marginally touching upon this subject in his artistic work. That sense was compounded around 1905 when the state of his health rapidly deteriorated, bringing a wave of fears not only of his approaching death but also of madness – a characteristic of the third and final stage in the development of syphilis. During his artistic career, apart from being the creator of the magnificent stained-glass windows of Wawel Cathedral and the Franciscan Church in Krakow, Wyspiański established his position primarily as the creator of numerous pastel portraits of his family, acquaintances, as well as self-portraits. In 1907, already on his deathbed, the artist executed his last intriguing self-image. In a 25 x 16 centimetre charcoal sketch, Wyspiański repeats his most common composition, self-portrait en face; that is, a portrait in which the face is only minimally turned to the left with a reduced or absent background. This time, though, a rapid, nervous line delineates the contours of the skull and draws attention to the dirty, sticky hair, while in an unusually strong way marking the left temple and the long arch of the very peculiarly joined eyebrows. What immediately attracts attention is the strong deformation of the face, most visible in the mouth area: the right side of the moustache is blunted by a vague blot, as if partially erased. Wyspiański renders the emaciation of the face as never before: the head, in comparison to previous self-portraits, seems to be much smaller, bony, and fragile. Intriguing as this self-portrait is as the very last and personal statement by an outstanding artist facing the experience of death, it can, however, be scrutinized within one more interpretative context: the representation of syphilis in fin-de-siècle culture. To some extent, as will be discussed later, it can also be seen as a moment of fiercely interrupted speechlessness in the experience of illness. The frankness, even cruelty of the artistic depiction of the artist’s own visage, as transformed by disease, provokes as well a separate question regarding the very function of artistic style in dealing with illness. 2.
Wyspiański – An Ailing Artist.
Wyspiański’s disease has never been questioned, and so there is no need for a “retrospective diagnosis,” which, as Deborah Hayden has demonstrated, is often a case in studies on syphilis, art, and literature. 1 However, Polish literary studies and art history have devoted only minimal attention to analysis of this last image, not to mention analysis of more subtle relations between Wyspiański’s biography, the experience of suffering from syphilis, and his oeuvre. Certainly one of the main reasons for this oversight stems from a puzzling reluctance by the artist himself to speak directly about his ailing condition. Hence Kazimierz Wyka, one of
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the foremost experts on Wyspiański, perceived him as an artist studiously avoiding any kind of personal and confessional lyricism, noting that “He saw, in his time, too much of a similar tendency, very often false and forced, for it to have ever seduced his proud, ironic, rough, and demanding nature.” 2 Only occasionally would the self-imposed silence break and reveal the other Wyspiański. Wyka points to such a few rare moments in Wyspianski’s oeuvre, finding the subject both fascinating and demanding of a more thorough essay or even a new, “existential biography” of the artist. Although Wyka’s seminal observations were pronounced in the 1960s, to date no one has responded to his call. What might be the reasons for this particular silence surrounding Wyspiański as an ailing artist? One cannot resist the temptation to claim that apart from the complexities of the subject, there has been an ideological image of syphilis as disease ultimately linked to promiscuity and prostitution, various and contradictory discourses surrounding syphilis since its first visual depictions (the strongest articulation of which came to the fore in the late 19th century), and Wyspiański’s lofty position in Polish culture, all of which has prevented any kind of deeper and methodologically rethought discourse about ‘Wyspiański as an artist who suffered from syphilis.’ Thus, such hazy phrases as ‘the artist, who died in his youth’ of ‘this terrible disease’ still remain the only references to him as an ailing artist. It must be noted that the project of reading into the signature of illness in Wyspiański’s work, attempting to extricate it from the subtext of both text and image, compels us to change our common approach towards what it means to represent illness. A number of scholars working on the issue have heralded syphilis as the most literary disease of the 19th century, the great successor of tuberculosis, which had primarily been construed as a romantic disease. However, case studies discussed by those scholars were clearly determined by a very narrowly understood thematization of disease, mainly as a topic or literary motif, or as a direct statement. As a result, there were few doubts about the ways syphilis might enter literature and art. 3 However, especially in cases of artists whose artistic responses to their suffering for complex reasons were removed from a direct fixation on an easily recognizable literal or visual motif, such an understanding of thematization and visualization of illness turns out to be very reductive. In order to offer a new view on Wyspiański as an ailing artist, in order to create a context for the questions posed through this paper, a radically different approach needs to be adopted: one that does away with such a narrowly understood motif or literary image and investigates into deeper layers of the work, into the unconscious of the text/image itself. Obviously, such an operation involves a detailed scrutiny of the individual style of the artist as well as his creative process, both of which must be understood in relation to Julia Kristeva’s concepts of melancholy and self-healing through engaging in artistic activity.
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Stanislaw Wyspiański (1869-1907)
Such an approach has a lot to do with the status of syphilis as the symbolic disease of fin-de-siècle culture where, despite its prevalence in public discourse at that time, it was nevertheless relegated into the sphere of the subtext. As Hayden writes: Syphilis was life’s dark secret. The word was taboo, with the terrifying diagnosis at most whispered to an intimate friend, and then only with assurances of utmost secrecy. It was too shameful to record by name in a diary and was alluded to in correspondence only in code. How much, I wondered, was syphilis an unacknowledged subtext in nineteenth-century biography? 4 Following Hayden, we can ask, then, how much of the syphilitic subtext is buried underneath Wyspiański’s intriguing last self-portrait? 3.
The Alienation of the Male Body
No pictures of Wyspiański depicting his face in the final stage of his life have survived and it is very likely that none were ever taken. We cannot be fully sure how his face looked at the time when he produced his last self-portrait. 5 Nevertheless, a certain image of his body has been preserved. It is known that during the last months of his life Wyspiański avoided leaving the secure space of his household and gave up regular trips to Krakow that he previously enjoyed so much, precisely because by that time his face had already been dramatically changed. According to a note from a doctor’s examination discovered in 1980, Wyspiański’s nose bone was removed in 1905, two years before he executed his last selfimage. 6 Accounts from the artist’s friends and acquaintances who paid him final visits reveal a certain ambiguity in the image of the artist’s body and, as I argue, they even develop a certain “strategy” for dealing with the shock of syphilis. While these accounts are not able to entirely omit any reference to Wyspiański’s devastated body, many of these accounts seem to be permeated with a peculiar desire to counter the horror of syphilis. They do so by demonstrating the moral dignity of the dying and his strong, unbreakable will. As one of these accounts, written by a leading Polish writer, Stefan Żeromski, notes, “[T]ill his very last moments, in his eyes, in his iris, in his physically destroyed fingers he kept the past and future of his humiliated nation.” 7 “The virtuous only become more so as they slide toward death,” wrote Susan Sontag in her seminal essay on disease. 8 “Fatal illness has always been viewed as a test of moral character, but in the nineteenth century there is a great reluctance to let anybody flunk the test.” 9 Sontag’s sentence brilliantly describes the attitude and expectations of those who came to pay their last visits to Wyspiański, yet at the same
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time it can be applied to a broader set of texts. This literary portrait of the dying artist, including a certain narration about the ailing body embedded in it, is of great significance, since it serves as a pattern for interpretation of Wyspiański’s more direct, lyrical, and self reflexive pieces of writing and art. No matter how strong the effort was to counterbalance it, the horror of the syphilitic body was nevertheless recorded in these accounts. According to a few of them, Wyspiański continued to work on his last texts and pictures even at a point when his body was in a state of advanced deterioration: his hands were oozing with pus, yet he persevered and continued to write and draw with the help of wooden splints attached to his hands with bandages. Of course, this image is transmitted only by means of written accounts, not visual depictions. What is known, however, is the extent to which the ravaging effects of syphilis were wrought on the body at the end of the 19th century; and these – predating and exclusive of written accounts – are documented by a vast and powerful medical and popular iconography that syphilis had managed to establish by the end of the century. “Today everyone has syphilis” has been an oft-quoted laconic sentence by Flaubert referring to the size of the syphilis epidemic in the 19th century. 10 Indeed, at some point twenty percent of the male population in Paris suffered from the disease. Only a few, however, as Elaine Showalter points out, were able to preserve their identities as “ailing persons.” Except for a few cases involving artists, “(s)yphilis had a face but no voice; while profligates and prostitutes were seen as its risk groups, they did not come forward to speak of the disease.” 11 They were written about and often visually represented, but themselves remained silent. It was mainly the discourses of Victorian morality and medicine that controlled the ailing syphilitic body. As Deborah Hayden points out, “It was this silent disease that perplexed and fascinated the medical community in the nineteenth century when scientific research dedicated itself to understanding, treating and seeking a cure for it. Syphilology became a respectable, challenging branch of medicine.” 12 Although widely represented, the syphilitic face was marked by gender which, in turn, organized and controlled depictions of the disease. As Sander Gilman argues, the beginning of the 19th century brought with it a newly-formed binary model of representation that focused on the ailing face of the prostitute and the genitals of the syphilitic male. 13 It is only through this binary model, which from the beginning of the century started to undergo the process of cultural codification, that two representations could exist and – what is more important – create meaning. In this manner, the binary structure of representation began to organize the field of the male viewer, through illustrating who he should avoid and, if he ignored these warnings, what kind of ravages might be infringed on his male body. An ideological message behind this construction is clear: “The infected male is
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Stanislaw Wyspiański (1869-1907)
anonymous, faceless, for he is the incidental victim of the female’s infection.” 14 At the turn of the century, however, the dubious balance of this iconographic configuration undergoes a dramatic change. According to Showalter, now these are women to become doubly silenced by the new system of representation of syphilis. As before they are still denied voice, now they no longer have a body either. In her text on the cultural image of syphilis in the fin de siècle, Showalter claims: The iconography of syphilis was primarily masculine. With its dramatic inscription on the male body, the hideous ravages of syphilis … made the disease a powerful deterrent in theological and moral reform campaigns to control male sexuality, seen as one of the main causes of degeneration. 15 In this context, D. H. Lawrence’s rumination on syphilis seems to be particularly meaningful: The great shock of syphilis created a rupture in human consciousness. In the nineteenth century, from having been a “pox,” a comic, manly disease, syphilis became a secret horror which alienated men from their physical selves. 16 The ravages of the disease were no less horrifyingly wrought on female bodies than male ones. However, it has been males who have felt alienated by the disease, and it has been the male consciousness, rather than, as D.H. Lawrence puts it, the generally “human” consciousness, in which the great shock of syphilis took place. In this respect, the shock of male syphilis was caused not so much by the disease itself but rather by its representation. Being a male and having syphilis meant an inevitable confrontation with the powerful, abundant, and hateful iconography of syphilitic the male body. How might the 19th century male syphilitics have introjected the social hatred toward their own bodies? What is the status of a self-portrait by a male, syphilitic artist? 4.
Artist of Death
Wyspiański, puzzlingly reluctant to speak about his illness, was recognized as one of Poland’s greatest artists of death in the 20th century. Parallels between his art and theatre and that of Tadeusz Kantor are not surprising, given Kantor’s strong fascination with Wyspiański, which was often overtly expressed. Stanisław Brzozowski, a contemporary and
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influential critic, was probably the first one who recognized Wyspiański as an artist whose true realm of creation was death. He argued: Between the world of the living – whose life is more rotten than the rottenness of death – and the shadows of the dead, stands the poet; he turns back from the ghosts and enters the realm of death in order to worship life with the dead. The rhythm of Wyspiański’s creation proceeds in such a vicious circle of resurrecting the past only in order to give it up, to liberate oneself from it. The past arises before the poet’s eyes, its empty eye sockets gaze at him and say, “You, alive, what do you wish from us? We already were – now the moment is yours – be. 17 Without any doubt it can be claimed, as Janusz Wałek claims, that Wyspiański’s oeuvre circulating around death is “shaped by the deeply personal perspective of the quickly developing and incurable illness that the artist was fully aware of.” 18 According to Wałek, Wyspiański’s poems, or rather semi-private personal poetic notes, are also rife with reflections about his death and illness. The sense of impending danger probably gave birth to one of the most intriguing poems, which Wałek notes “is marked by an almost hysterical irritation” 19 : How will I calm myself down full of fear are my eyes, full of terror are my thoughts, full of dread is my heart, full of trembling are my breasts – how will I calm myself down 20 Wałek is extremely careful not to ultimately pin down the meaning of the poem by binding it to illness, and thus he adds that “certainly, this poem may as well have other, more general references.” 21 This move is extremely significant since, according to a common though yet uncodified tradition, the poem (which has been dated to around 1897, roughly the time when Wyspiański was diagnosed) was not only the first artistic recognition of the artist’s own condition but also the way in which Wyspiański communicated the dreadful news to his aunt, Joanna Stankiewicz. Not being able to confront his aunt in a direct manner, he instead passed her a little sheet of paper containing the poem-confession. Even if the context of creation was not pressured by family, however, the poem can certainly be related to the experience of illness. Furthermore, having been written approximately ten years before Wyspiański’s death and before the last self-image is executed, it can be related to his very early experience of disease, perhaps even marking the very moment when
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Stanislaw Wyspiański (1869-1907)
syphilis begins to change Wyspiański’s existence forever. If such a hypothesis is true, it contradicts a common conception of Wyspiański as a very discreet artist, and the history of his disease turns out to be framed by two very personal and very direct artistic enunciations: the poem and the last self-image. Yet these two enunciations differ greatly in their depictions of the artist’s condition as expressed through different media. While the poem constructs an image of the body divided into different, clearly symbolic parts which nevertheless become reunited in fear and torment, the last self-image, to some degree continuing and repeating Wyspiański’s style of self-portraiture, focuses only on representation of the face (the hateful male syphilitic face of the end of the 19th century?), cutting it off from the rest of the ailing body. 5.
On the Verge of Melancholia
Is it a real-life deformation that lurks behind Wyspiański’s selfportrait? Is it, in this sense, a realistic portrait? Wyspiański, a brilliant drawer, was not a realist artist in the proper sense of the term. However, one can easily imagine his expressive and tense line, even with all of its high selectiveness, as able to depict any kind of facial deformation. But if we assume that the “canonical” images of syphilis from the fin de siècle might be of help here in identification of the image of a syphilitic person, then the answer to these questions would have to be no. Wyspiański’s last self-portrait does not resemble any of the canonical depictions. The distortion visible in the image, because it is too far from being “strictly syphilitic,” does not allow us to claim that it sends the viewer directly to the representation of syphilis. Common aspects of the canonical representtation such as maculae, papules, tubercles, pustules, blebs, tumours, lesions, scales, crusts, chancres, gammas, fissures, and scars do not appear in the image at all. A narrowly interpreted motif or image would then exclude Wyspiański from the gallery of other 19th century syphilitic artists. However, an interpretation can also be carried on in another direction. Although the deterioration of Wyspiański’s face and body was beyond doubt real (his nose bone having been removed two years earlier), his last depiction, despite the vague deformation it presents, leans in the direction of a phantasmal distortion, rather than a real one. A set of questions arises immediately. Does the visible deformation in the image have little to do with Wyspiański’s real body at this stage of his life, and, thus, is what the self-portrait presents an image of his inner self, a portrait of his tormented consciousness? Or, since the representation of the syphilitic body in the 19th century had been both alienating as well as ideologically invested, could the self-portrait be Wyspiański’s attempt to create a new (and contradictory) language to speak about the illness, or is it perhaps a sign of an already well-formed language, operating with a complicated metaphoric and symbolic system, born from a close encounter
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with transgressive sexuality and death? 22 If this is the case, Wyspiański’s last self-portrait would testify to a project of positive, life-affirming artistic creation, despite its being rooted in the despair and horror he apparently was confronting at the brink of illness and death. Finally, we must consider whether it is the crude facture of the image (a charcoal sketch) that determines its final form. If this is the case, it is of value to compare it with Wyspiański’s two other self-portraits in pencil done seventeen years earlier in 1890. The earliest depicts a sleek, milky, childlike face with delicate contours and shading. The second, portrait en face, a quite uncommon approach to self-portraits in Wyspiański’s oeuvre, only exacerbates the general impression this second image evokes: that of a manly, confident face and a sharp, authoritative gaze. There is a continuity between these images: both of them insist on the face as the site of totality in form and completeness, and this very trait becomes even more discernible when viewed next to the last self-portrait. I want to argue that, seen in this light, two early images open a series of depictions of Wyspiański’s face where a certain modus of the understanding of one’s own image is worked out; only through this modus, the face becomes not only visible but also comprehensible and recognizable by the artist as well as by the viewer. Nothing from this project remains in the last depiction of Wyspiański. Here, a curvy, elegant line, one of the recognizable characteristics of Wyspiański’s modernism, reaches its total opposite: it becomes the locus of the tension in the image, operating on the contrast between sharply edged skull, blurred hair, mouth, and moustache. It can hardly be said whether the purpose of the line is to draw and thus cut the contour of the face out of the background, or instead to blur it, thereby destroying the possibility of his own image coming into pictorial existence at all. This tension organizes itself unequally by focusing on certain points. The sharply articulated line of the skull in the upper right-hand corner of the image seems to fade away to a point of total vagueness and ambiguity as our gaze moves downward. The bow-shaped eyebrows and the forehead seem to create the last stem for what lies below them and this part of the portrait undergoes a gradually greater deformation: eyebrows, protruding and black-ringed eyes, the uncanny crimped and unstable line of the nose; a large and strongly deforming blotch around the mouth, blurring the whole lower right part of the face and rendering the mouth itself almost invisible; the expansive moustache, which, at the right side of the image, sticks out beyond the contour of the face and sags. The left contour of the face in the cheek area is multiplied by many lines drawn side by side, as if Wyspiański was looking for this contour but unable to find it or, on the contrary, as if he tried to lose it within its multiplication. Certainly, this final image was produced at a time when Wyspiański’s body was in a state of very advanced deterioration and his hands were wrapped in bandages. Nonetheless, the image is not devoid of fine details
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Stanislaw Wyspiański (1869-1907)
such as a sharply and precisely marked left iris, itself a contrast to the generally overwhelming destruction and proof of the yet uncompromised technical accuracy of the artist. This striking detail of the representation immediately draws any viewer’s attention. Wyspiański’s self-portraits, according to the tradition of interpretation best represented by Kazimierz Wyka, can be regarded as a series dominated by the artist’s increasing introspection, clearly related to his own painful recognition of his condition, as well as his shattered expectations concerning his family life and art. Within this interpretative tradition, special attention is granted to the following pieces of work: a famous blue pastel self-portrait from 1894, a self-portrait from 1902, and a self-portrait with his wife. There is, of course, an aesthetic side to the introspection. A number of Wyspiański’s self-portraits along with portraits of his family (mainly children) and acquaintances have been described within a paradigm of melancholic art: the construction of the painting with the focus always on the face and on a gaze lost in the distance, in search of an imprecise, intangible object. The best example here is certainly the self-portrait from 1902, and although Kazimierz Wyka surprisingly omits this in his text of Wyspiański’s introspections, others have included it. The whole composition, with brightened, polished pastels in the face whose gentle bluish shadow contrasts with a dark-brown and only roughly depicted coat, strongly intensifies the impression of not only stability and calmness, but also of a peculiar frozenness, as if illustrating the state of “the coldness and emotional paralysis of the melancholic person” as evoked by Julia Kristeva in her essay on Holbein’s Dead Christ. 23 In these alternative interpretations of the last self-portrait, we can track down the moment in which the strategy and pattern of depicting Wyspiański’s ailing body, employed by his acquaintances who saw him on the deathbed, begins to permeate interpretations of his works. Janusz Wałek wrote: Wyspiański’s last self-portrait, done in charcoal and already a death-image, depicts a sparkle of this penetrating iris; though the trace of death is clearly visible in it, it is transformed into a desire for life: the troubling, angry gaze, posing a challenge beyond the strength of one singular life. 24 Such accounts attempted to persuade the reader that Wyspiański was even greater when he was dying because his devastated body becomes the site of his unbreakable will’s triumph over the constraints of nature, life, and death. Here we have an example of what Sontag recognizes as a universal pattern in the depiction of suffering from illness. All of the above accounts focus a special delight on Wyspiański’s steel-blue eyes as the locus of his great spirit. Regarded in this way, not sōma, not even a face, but eyes
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alone become Wyspiański’s true image. The last portrait, then, is nothing but a portrait of consciousness trapped within a deteriorating body. It is undeniably true that in the self-portrait the eyes are the detail that immediately attracts attention. Protruding from their orbits, with sharply marked irises, full of wrath or simply terrified, the eyes crave attention, and capture the viewer. Comparison with the 1903 self-portrait reinforces this impression. Here, melancholic search for the lost object renders the eyes neither sad nor desperate. Wyspiański, the artist, peacefully contemplates his own visage and lets the viewer do exactly the same thing. The last self-portrait, however, cannot simply be regarded as a powerful appendix to the introspective chain, while still remaining within the melancholic paradigm. As an appendix it would remain as proof of a yet unabased zeal for creating a new language of introspection, a new language to speak about one’s own condition and illness. Furthermore, it would also constitute an attempt to sustain (or maybe to re-establish) a melancholic and thus stable relation between the space of the body and the field of the image since it is an artistic style that, in Kristeva’s terms, embodies a particular potential to rule over the chaos of one’s melancholy: Very much like personal behaviour, artistic style imposes itself as a means of countervailing the loss of the other and of meaning: a means more powerful than any other because more autonomous (no matter who his patron is, isn’t the artist master of his work?) but, in fact and fundamentally, analogous with or complementary to behaviour, for it fills the same psychic need to confront separation, emptiness, death. 25 According to Kristeva, a melancholic moment sediments in a piece of work that then bears it only as a trace of the past hiatus. Kristeva’s project is then positive: an artistic activity wins over the melancholic moment, which in return can bring into the system of representation new and thus far unknown dimensions. The bonds that tie the subject to the body and meaning are recovered and secured again. There are peculiar bonds that link together melancholy, realism, and mimetic art. Melancholy, despite the break and the loss of meaning, requires a strong will to sustain and preserve the body and the image of it, thereby placing itself at the site of re-presentation and reference. A melancholic moment may indeed signify a crisis, the total collapse of the symbolic system and meaning. However, the representation that preserves melancholic hiatus as a trace, finds itself on the other side, as the positive project of the secured artistic style, imagination, and body whose saved and finally safe image now becomes apparent. In Wyspiański’s oeuvre, the best example of this secured, frozen image of the face is the self-portrait
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Stanislaw Wyspiański (1869-1907)
from 1902 with its attempt to close the face in elegant lines, brightened colours, and delicate shading – the execution of the face that shows Wyspiański’s melancholic disenchantment is now transformed into the beauty of his own visage. 6.
When the Bonds with the Body Are Severed
As previously argued, it could be relatively easy to advance a hypothesis that would treat the last self-image as the sign of a new language that, on one hand, is born out of the loss and horror of the ailing body and, on the other, preserves the signs of despair by transforming it into distortions within the visual field and tensions between various areas of the face, all the while remaining within the ambit of the melancholic canon. Extolling one’s wound while mastering the loss imposed by it exemplifies Kristeva’s notion of the role of an artistic style in the process of (self) healing. But at the same time we have to remember that it is an artistic activity (anti-melancholic in its essence), with the accent put on decisive counter-action to the loss, that allows the subject to transcend his or her melancholia. Although there are strong links between the melancholic and syphilitic portraits in the period, and despite the fact that the works delivered by Wyspiański before 1907 do indeed bear distinctive features of melancholia, my claim is that the last self-portrait is, on the contrary, the site of the break with the melancholic paradigm. This is true even though I consider this portrait the moment where the syphilitic body, earlier only sediment in the subtext, now approaches the surface of the painting. To again quote Kristeva: Is it still possible to paint when the bonds that tie us to the body and meaning are severed? Is it still possible to paint when desire, which is a bond, disintegrates? Is it still possible to paint when one identifies not with desire but with severance, which is the truth of human psychic life, a severance that is represented by death in the imagination and that melancholia conveys as symptom? 26 According to this notion, melancholia, as a symptom of the identification with severance, is capable of giving birth to melancholic aesthetics. However, what if the severance is too great and too overwhelming to produce a piece of work that would still remain in the framework of any aesthetic project? Those who witnessed Wyspiański during his last days and felt compelled to relate their stories took pains to create and sustain the image of the artist whose moral dignity, even in his last moments, remained untouched by “this horrible disease” and who, although struck down with
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illness, “kept the entire nation in his ailing fingers.” Wyspiański was a strong personality. However, it is reasonable to be suspicious about the ideological slant those accounts take. What might be true about the man who executes the melancholic self-portraits does not necessarily have to be true about the man who, in 1907, executes his last image. Had a potent artistic activity, strong enough to overcome loss (according to Kristeva’s notion), perhaps been confronted with the horror of a body too horrendous to be capable of saving meaning this time? Wyspiański’s oozing fingers were not able to hold anything, be it a pen, pencil, or an entire nation. Wyspiański’s last self-portrait, though only a charcoal sketch, does not bear the signs of an uncompleted piece of work. While not repeating any patterns of the representation of syphilis, or the self-created patterns of depiction of his own image, the centre of the facial deformation (a vague blot around the mouth), as if partially erased, seems to preserve rather a moment of incapability of the artistic style of countervailing the loss of meaning; the moment of the final exhaustion of the melancholic paradigm. The breakdown of the symbolic system (in Kristeva’s terms) is translated here into a total dishevelling of the lines of the face and the disturbance of the canon of representation of his own image. Provided it had been this canon through which the face had been visible, comprehensible and recognizable, a new self-image now becomes the site of a symbolic non-sense. The deformation of the artist’s face, although real, is not represented. There is only a lack of totality, a partial erasure; the site between the not-depicted facial distortion and the undepicted totality of the image. An other face.
Notes 1
Deborah Hayden POX: Genius, Madness, and the Mysteries of Syphilis (New York: Basic Books 2003), 60-68. 2 Kazimierz Wyka, Wyznania uduszonego (Kraków: Universtitas, 1995), 116 (my translation). 3 For example: Jean Goens, De la syphilis au sida: cinq siècles des mémoires littéraires de Vénus (Bruxelles: Presses interuniversitaires européennes, 1995), Patrick Wald Lasowski, Syphilis: essai sur la littérature française du XIXe siècle (Paris: Gallimard, 1982). 4 Hayden, xv. 5 There is in fact a photograph depicting Wyspiański’s corpse on the deathbed. However, the poor quality of the photograph as well as the fact that it was taken from a very low right angle (thus concealing the left side of the face, the one that in the last self-portrait bears deformation) make the face almost invisible.
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Stanislaw Wyspiański (1869-1907)
This note was discovered by Wyspianski’s biographer, Krystyna Zbijewska and mentioned in her book about the artist Orzeł w kurniku. Z życia Stanisława Wyspiańskiego (Warszawa: Panstwowy Instytut Wydawniczy, 1980). 7 Wyspiański w oczach wspolczesnych, ed. Leon Płoszewski (Krakow: Wydawnictwo Literackie, 1971), 471 (my translation). 8 Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (New York: Picador, 1990), 41. 9 Ibid. 10 “Plus ou moins, tout le monde en est affecté” in Goens, 97. 11 Elaine Showalter, Sexual Anarchy: Gender and Culture at the “Fin de Siècle” (London: Bloomsbury, 1991), 191. 12 Hayden, 29. 13 Sander Gilman, Sexuality. An Illustrated History. Representing the Sexual in Medicine and Culture from the Middle Ages to the Age of AIDS (New York: Wiley, 1989), 238. 14 Ibid., 238. 15 Showalter, 192-193; my emphasis. 16 Ibid., 199. 17 Stanisław Brzozowski, Współczesna powieść i krytyka (KrakówWrocław: Wydawnictwo Literackie, 1984), 335 (my translation) 18 Wałek, Stanisława Wyspiańskiego instynkt śmierci, in Stanisław Wyspianski. Studium artysty: materialy z sesji naukowej na Uniwersytecie Jagiellońskim 7-9 czerwca 1995, ed. Ewa Miodońska-Brookes (Kraków : TAiWPN Universitas, 1996), 41. 19 Wałek, 45. 20 My translation. 21 Wałek, 45. 22 Transgressive sexuality not necessarily in the sense of Wyspiański’s own sexuality but rather as one regarded as transgressive in the syphilitic discourse of the fin de siècle as linked to illicit sexual practices (prostitution, homosexuality). 23 Julia Kristeva, The Black Sun. Depression and Melancholia. Translated by Leon S. Roudiez (New York: Columbia University Press, 1989), 107138. 24 Wałek, 47. 25 Kristeva, 129; my emphasis. 26 Ibid., 136-137; my emphasis.
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Bibliography Brzozowski, Stanisław, Współczesna powieść i krytyka. KrakówWrocław: Wydawnictwo Literackie, 1984. Gilman, Sander L., Sexuality. An Illustrated History. Representing the Sexual in Medicine and Culture from the Middle Ages to the Age of AIDS. New York: Wiley, 1989. Goens, Jean, De la syphilis au sida : cinq siècles des mémoires littéraires de Vénus. Bruxelles : Presses interuniversitaires européennes, 1995. Hayden, Deborah, POX. Genius, Madness, and the Mysteries of Syphilis. New York: Basic Books 2003. Kristeva, Julia, The Black Sun. Depression and Melancholia. Translated by Leon S. Roudiez. New York: Columbia University Press, 1989. Showalter, Elaine, Sexual Anarchy: Gender and Culture at the “Fin de Siècle.” London: Bloomsbury, 1991. Sontag, Illness as Metaphor and AIDS and Its Metaphors. New York: Picador, 1990. Wałek, Janusz. Stanisława Wyspiańskiego instynkt śmerci in Stanisław Wyspianski. Studium artysty: materialy z sesji naukowej na Uniwersytecie Jagiellońskim 7-9 czerwca 1995, ed. Ewa Miodońska-Brookes (Kraków : TAiWPN Universitas, 1996) Wyka, K. Wyznania uduszonego. Kraków: Universtitas, 1995. Wyspiański w oczach współczesnych, ed. Leon Płoszewski. Krakow: Wydawnictwo Literackie, 1971
Note on Contributor Tomasz Spiewak is a doctoral student in the IPP program Performance and Media Studies in the Institute of Theatre Studies at the University of Mainz, Germany. In 2002 he graduated from the Institute of Polish Literature at Jagiellonian University in Krakow, Poland. Since then he has
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been working on his doctoral dissertation in comparative literature and theatre, devoted to representation of body and illness at the turns of the 19th and 20th centuries. Currently he is a visiting scholar in the Department of English and Comparative Literature at Columbia University in New York .
Part 2
The Epistemology of Biomedicine
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The Anthropology of Aetiology James Davies Abstract Despite overt claims of thinking in complex ways about aetiology, a proclivity to think reductively when making diagnoses still widely exists in many clinical traditions (thinking in terms of ‘first causes’ rather than ‘primary causes’). Even for practitioners within mono-causal systems (e.g. biomedicine and psychoanalysis) who acknowledge the intricate nature of causality, we can still infer from their practices a reluctance to jettison ideas of ‘first causes’. We stress that this is particularly the case in certain psychotherapeutic traditions where reductionism has a historical legacy. Rather than accounting for this reluctance by looking to the psychological characteristics of the practitioners involved, or to the power dynamics between medicine and state, we look to the competitive social context in which curative systems are obliged to vie for resources and status. We thus partly locate this reluctance to relinquish reductive thinking in the authority reductionism confers; an authority which if believed by a sufficient body of practitioners, policy makers, and users, helps secure the tradition’s position in the market place. From this standpoint, we identify one important factor among others that accounts for reductionist practice in curative traditions, suggesting that reductionism lives on since it serves the interests of the curative tradition itself with its ongoing struggle for explanatory authority, status, and survival amid a contending sea of possibilities. Key Words: Aetiology; Reductionism; Diagnosis; CBT. In this paper I shall argue that thinking reductively about aetiology cannot be accounted for by psychological and socio-political explanations alone. Rather I argue that the tendency to think in terms of ‘first causes,’ which can be observed in certain psychotherapeutic and biomedical traditions, has its origins partly in the authority reductionism confers. In addition, this authority is ever more needed in a heterogeneous society comprising many disparate healing traditions all of which are contending to explain and treat the one symptom configuration. Thus holding onto reductionism can be interpreted in the light of the interests of the curative tradition itself with its ongoing struggle for explanatory authority, status, and survival amid a contending sea of systems. By means of drawing some crucial distinctions between mono- and multi-causal systems, and ‘first’ and ‘primary’ causes, I will show that where a given curative tradition locates the source of a particular complaint constitutes more than
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just a medical act; it is, in addition, a socio/cultural act that has survival implications for the given curative tradition of which this act is a part. The first essential step in framing this argument is to draw a broad distinction between two types of intervention used in different curative traditions: mono-causal and multi-causal intervention. We can characterise mono-causal curative systems as those that tend to direct their alleviative action at one phenomenological domain or another, such as at the body, at the mind, or at the wider social or meta-social environment. Examples of mono-causal practice are readily found in many Western curative traditions. In the biomedical tradition, for instance, the cause of a particular illness is mainly sought for in the individual’s body. This view of clinical reality assumes that biologic concerns are the more basic or ‘real’ concerns so far as it is biological rather than sociocultural or psychological causes of distress to which curative action is levelled. An example of the type of thinking that may underpin monocausal practice is powerfully illustrated by Margaret Lock and Nancy Scheper-Hughes’ description of a rounds presentation at medical school. They write: We are reminded of a grand rounds presentation before a class of first-year medical students that concerned the case of a middle aged woman suffering from chronic and debilitating headaches. In halting sentences the patient explained before the class of two hundred that her husband was an alcoholic who occasionally beat her, that she had been virtually housebound for the past five years looking after her senile and incontinent mother-in-law, and that she worries constantly about her teenage son who is flunking out of high school. Although the woman’s story elicited considerable sympathy from the students, many grew restless with the line of clinical questioning, and one finally interrupted the professor to demand “but what is the real cause of the headaches”? 1 It may be less the case that these students are oblivious to the sociocultural influences on this patient’s distress, than that they feel this consideration as simply irrelevant to their practice. To them the sociological distress has coalesced in the body. It is this coalescence that is perceived as the real cause of distress. To locate the cause of a disorder in any region other than the physical body would be to render the doctor’s remedial intervention less directly curing and, at best, palliative or alleviative. The mono-causal practice of the medical doctor differs only in external particularities from that of the psychoanalyst, since structurally
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they are the same. As this paper dwells more specifically on the practice of psychoanalysis it is important that I first justify why this system should be classified as mono-causal. Psychoanalysts are prone to think in monocausal terms when they regard the real cause of a complaint as residing in the psyche. As one psychoanalyst tells us, ‘the wish for further insight in order to discover the unconscious meaning of unsatisfactory life situations or incomprehensible symptoms implies acceptance of the fact that ultimately the cause of psychological symptoms lies within oneself.’ 2 At this point a certain objection might be raised that this quotation does not capture an attitude that is representative in the psychoanalytic community, since, it could be argued, psychoanalysis as a discourse has always acknowledged the influence of formative environments on individual psychology. This objection would indeed be powerful only if the following points were overlooked; firstly, that the term ‘environment’ means for the psychoanalyst something quite different from what it means to either the anthropologist or the sociologist; and secondly, that the consequence of any interaction between environment and psyche always coalesces in psyche in the form of a primary cause. Both these points warrant closer attention. Firstly, to clarify the different meanings the term environment holds for anthropological and psychoanalytic discourses, we may turn to the work of the mid 20th century sociologist C.W. Mill. His distinction between ‘the personal troubles of the milieu’ and ‘the public issues of social structure’ appears to clarify this matter so far as it separates those disorders which have their origins within the character of the individual and his/her immediate family milieu (i.e. within the immediate environment), from those transcending the immediate range of nuclear relations and the range of the person’s inner life (i.e. having their origins in the wider social world). Illustrating this differentiation Mills writes: consider unemployment. When, in a city of 100,000 only one man is unemployed, that is his personal trouble, and for its relief we properly look to the character of the man, his skills, and his immediate opportunities. But when in a nation of 50 million employees, 15 million men are unemployed, that is an issue, and we may not hope to find its solution within the range of opportunities open to any one individual. … Consider marriage, inside a marriage a man and a woman may experience personal troubles, but when the divorce rate during the first four years of marriage is 350 out of every 1,000 attempts, this is an indication of a structural issue having to do with the institutions of marriage and the family and other institutions that bear upon them. 3
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Mill’s work is useful here as his concept of issues refers to problems whose causes are located in ‘environment’ as the term is generally understood by the psychoanalyst, while his concept of troubles pertains to problems which find their origin in an ‘environment’ that is sociologically defined. When psychoanalysts speak of environment, then, they do so in a qualified sense from the sociologist’s standpoint. For the psychoanalyst ‘environment’ refers to original formative environment of both the parents and the immediate milieu and not, as Mills would regard it, to the wider structural world in which this nuclear nexus is embedded. 4 If I have clarified to some degree the different meanings the term environment carries for each discourse, the second point referring to the ‘coalesce of disease’ still needs to be addressed. As I mentioned earlier the method of identifying where any curative discourse locates the source of suffering is to notice where the given discourse directs its alleviative action. So far as the techniques of psychoanalysis are aimed at individual psychic life, the patterns of dreams, fantasies, and emotional happenings that daily assail the patient, analysts are directing their cure at the psyche. For the analyst the consequences of the early dynamics of the nuclear triad (mother, father, and child) coalesce in psychology in the form of developmental impediments. It is this coalescence that is considered the main cause, as it is this coalescence that is treated in analysis. This is not to say that other influencing causal factors along the chain are ignored and that all analysts fail to understand the complexity of causality; rather it is simply to note that in terms of treating the patient, these other causal factors are not considered relevant. 5 The psychoanalyst is equipped to treat ‘psychological disorders’ alone, and thus the social world and its impact on the person is given less attention. 6 Analysing the origins of the mono-causal nature of psychoanalysis would take us beyond the purview of this paper but one such influence may be profitable to explore, if only perfunctorily, before moving to my description of multi-causal systems – namely, Freud’s relationship with his social world. Freud, in many respects, was a man of his day, a man typical of middle-class bourgeois Vienna, a conventional man who plainly accepted the social reality with which he was presented. At face value this representation of Freud’s relationship with his environment seems to contradict the common belief of a man highly at variance with social convention. But if we probe deeper we find that apart form his objection to the overly strong social taboo on sex, he accepted most of his society’s dominant values. We can infer this acquiescence from both his practice and his writing. His positivism, his views on patriarchal dominance, his dichotomising of the rational/irrational (and his championing of the former), his acceptance of economic values of the middle classes, are all attitudes that lie implicit in this writing, attitudes which characterise the conventional thinking of his day. Erich Fromm has eloquently explored all these factors
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in his book Sigmund Freud’s Mission that constitutes a psychosocial investigation of Freud’s character. 7 Freud’s general orientation had an impact on his interpretation of psychological distress. He did not regard modern Vienna as a reprehensible social system, and therefore located the cause of distress not in that society but rather in a disordered psyche. Thus root causes were sought more in the patient’s ill adaptation to an acceptable social world than in the very foundation of society itself. Therapy involved bringing the patient back into healthy relationship with his or her social surroundings, not empowering individuals to oppose and seek alteration of a situation outside of themselves. If society is without blame then the origin of illness resides elsewhere – within the psyche of the individual. Freud’s complicity with his social world not only influenced his theory and practice, but also all subsequent developments within the field of psychoanalysis itself. This crude representation of Freud’s attitude to his social world could be greatly embellished, but for now we offer it as footnote concerning one key factor as to why psychoanalysis has traditionally opposed a socio-centric vision of aetiology. Indeed, the focus on the individual psyche is diametrically opposed to the socio-centric vision that is ascendant among the social sciences today. If we wish to look for the foundations of psychodynamic thought then we must look to the personality of its founding father, his attitudes, intellectual bias, his culturally coloured assumptions, all things constituting the foundations of most psychodynamic thinking. If the above discussion shows that both biomedical and psychoanalytic systems are examples of mono-causal traditions that, by necessity, direct their curative action at one phenomenological domain alone, then let us now turn to discussing the nature of multi-causal systems. These systems, instead of directing curative action at one domain, say at psyche or body, will level curative action at a number of domains simultaneously and thus are more holistic in approach, postulating several causes acting together. The West African diviner is a perfect example of a doctor who casts about him for the many causes of distress. The doctor looks to the patient’s diet, to physiology, to current relationships, to the patient’s rapport with the ancestors or community spirits, he looks to the cosmos, to the patterning of the stars, to inter-communal tensions; he looks to all these different domains to ascertain the possible source or sources of distress. It is only after having conducted this comprehensive surveillance that he gathers up the facts and infers from them where curative action is to be targeted, often deciding to direct such action to many domains at once. 8 Multi-causal practice will proceed in a manner quite unlike that found in mono-causal systems. In a sense these two systems reside at opposite ends of a working spectrum. The term ‘spectrum’ is one used advisedly since it leaves open the possibility that other kinds of practice
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dwell between these two polar ends. Indeed, it is certainly the case that there are systems that are neither mono- or multi-causal but rather what we might regard as dyadic or triadic in orientation. An example of a dyadic system might be psychiatry, insofar as it is equipped to level curative action at two domains simultaneously: at body via pharmacology, and at psyche via psychotherapy. Psychiatry also on occasion enters the triadic realm so far as it involves manipulation of the environment for curative ends. Certain modern psychiatric day-centres, for instance, as well providing prescriptions and psychotherapy, also work to provide a physical space conducive to the patient’s well-being. 9 Art rooms, games rooms, comfortably furnished common-rooms will comprise the physical make-up of the centre, a corporeal space judiciously manoeuvred to support the patient’s recovery. The acknowledgement that practice other than mono- or multicausal exists does not sabotage the central point that I emphasise – namely, that the curative action of those holding to mono-causal systems (such as the psychoanalyst) appears quite different from the curative actions performed by those who practice multi-causality. Mono-causal practice directs curative action at one domain, while multi-causal practice potentially directs action at many different domains. Another important feature distinguishing mono-causal from multi-causal systems, is that monocausal systems often imply the notion that there is a first cause sitting at the root of any given complaint. They oblige the practitioner to practice as though there were things such as first causes, as though there were some foundation of illness that could be unearthed or, as the medical student introduced at the beginning of the paper phrased it, as though there were some ‘real’ cause to be treated. However, if we were to ask the practitioner whether any other influences might have precipitated the first or ‘real’ cause, we would be met invariably with a positive response. We might be told that a first cause, such as a patient receiving insufficient mothering as a child, might have had its roots in social determinants that inhibited the care-giver’s ability to sufficiently support the child. The psychoanalyst might also readily admit that these determinants might be bound to wider economic and socio-political factors. Similarly, with the medical doctor we might be told that a first cause such as carcinogens in the diet, might have its roots in a number of non-biological factors, from the patient’s being ill-informed about correct diet, to his inability to procure satisfactory nutrition and so on. Thus, although a practitioner such as a medical doctor or a psychoanalyst may practice as though first causes exist, he or she if pressed will often admit to thinking in more complex ways about aetiology, a fact which highlights a very real discrepancy between thought and practice. 10 So far, then, as the idea of ‘first cause’ or ‘real cause’ connotes a reality inconsistent with much practitioner thinking, an idea that is more tacitly held then explicitly, just as it is more inadvertently taught than
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overtly. A reasonable question to ask, then, is why hold to this idea of ‘first causes’ at all? Why not cast it overboard as an item to be someday gathered up by future historians of science, an artefact that is largely irrelevant to our practices today so far as it peddles a fallacy about aetiology. Before I answer this question let me first ask whether or not there might be a preferable idiom in which to cast our understanding of aetiology. Or in other words, let me ask whether there is another conception of causality that better suits what we intuit to be the case – namely, that we are never dealing with definitive or first causes when treating illness. I think it must be clear that there are indeed an abundance of preferable conceptions and we need only to search for them. One such conception might be to think in terms of primary causes. This phrase, while connoting none of the finality inherent in the phrase first cause (a finality that conjures up images of a causal foundation from which all subsequent troubles stem), has the added merit of capturing the idea that by and large all mono-causal systems direct their alleviate action at one causal domain alone and that by implication such systems do not treat (nor of course should we expect them to treat) the whole configuration of causes that may have contributed to the given complaint. This phrase sits well, then, with an image of aetiology that more resembles a casual chain than a causal bedrock; a chain along which are strung the many contributing factors to the particular distress. This image implies that different mono-causal systems direct their alleviative action primarily at one notch on this chain’s continuum. Inculcating mono-causal practitioners with the idea that they are never treating first-causes, but rather treating what we have termed ‘primary’ causes that dwell on a chain of influence, sensitises such practitioners to the fact that mono-causal systems are limited. The medical doctor cannot be expected to cure the social deprivation that may have prompted the depression which weakened the immune system that in turn permitted the flu. Physicians can only treat the flu and perhaps the immune system leaving others to effect change in other causal domains. Likewise, psychoanalysts who always think in terms of primary causes will be more open to recognising the limitations of their discourse and to acknowledging to the patient, to speak figuratively, when a doctor dealing with a different causal domain should be called in. Such an analyst would practice in accordance with an attitude contrasting that engendered by a belief in first causes and all that this implies: that there is a foundation to mental disturbance, an irreducible happening or collection of happenings to which we can confidently point as the origin of distress. This ‘reductive’ attitude does not allow for ambiguity or uncertainty, nor does it encourage the natural humility we must by necessity entertain when acknowledging the thorough complexity at the heart of all causal questions.
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Now that I have made clear the distinctions between mono- and multi-causality and primary and first causes and clarified that many practitioners, although practicing as though first causes exist, readily admit that there is no such first cause that is itself beyond influence, it falls to me to take up the final concern of this paper and ask why then this resistance to conceiving illness aetiology in terms other than first or real cause? Or in other words, why this reluctance to expose tacitly held ideas of first causes and replace them with an explicit and humbling adherence to a conceptualisation that rather emphasises the primacy of all intervention? I shall start by noting a few answers, some obvious some not so, that can be given to this question. Firstly, we must recognise that the particular explanatory perspective we assume when answering this question will influence any answer given. A psychologist, for instance, might answer that thinking in terms of first causes endows the practitioner with a sense of certainty, with the belief that they have found a foundation to the problem. It is this certainty that allows them to act in what are often quite stressful and uncertain situations. Without such certainty there might be hesitancy of action, which can only bode ill for a patient who is in an emergency state. Joan Cassell noticed the necessity of certainty in the practice of surgeons, where uncertainty is not an alternative they can afford. 11 Viewed from this perspective, a practitioner might be reluctant to let go of the idea of first causes due to the uncertainty that could arise. Alternatively a biomedical purist who reduces distress to biochemistry or else to a genetic explanation might readily say that the physiological basis to distress is not an ‘assumption’ but an axiom – we speak of first causes, he might say, because to locate the first cause of malady in the body is to approximate ‘truth’ most closely since there is in reality a causal bedrock from which all ensuing socio/psychological/biological dis-ease stems. This attitude assumes a materialist reductionism that accords no significance to any social-psychological factors that may have preceded or acted in conjunction with the biological cause. It follows, then, that if we ourselves wish to avoid the pitfalls of such reductionism we are obliged to say that if they contain a certain ‘truth,’ they do not contain the whole truth. Whatever might be the case, I believe they are neglecting an important factor that might be unearthed by the sociological or, as I would call it, the anthropological perspective. In the last part of this paper I wish to articulate an answer to this question from this anthropological perspective. The following reflections have been derived from research I have been conducting among psychotherapeutic communities in London and Oxford, mainly psychoanalytic and psychiatric. The first thing to remember is that multi-causal systems such as the divination system I mentioned earlier, are usually found in small-scale, homogenous societies where a variety of curative discourses do not exist to treat different illness domains (e.g. a psychology for the mind or
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biomedicine for the body). 12 This contrasts with the fact that most monocausal systems are found in large-scale heterogeneous societies where a number of curative systems exist side by side often in competing relation. Unlike the multi-causal systems, then, mono-causal discourses rarely appear in isolation but always amid a sea of neighbouring discourses that contend for explanatory authority. This jostling for explanatory authority is very real and clearly evinced in the recent struggles between two different camps within psychiatry, especially in the United States. On the one hand, there are those practitioners who are more biomedically inclined while, on the other, there is a group primarily interested in psychodynamics. 13 Both camps are dealing with a configuration of facts whose aetiology can be interpreted from different perspectives, including the biomedical and the psychotherapeutic. We must also remember that when we speak of ‘psychotherapy’ we are not dealing with a neatly circumscribed system of knowledge and practice. Within the field itself there are many competing therapeutic schools and alternatives from cognitive behavioural to humanistic, to psychodynamic psychotherapy. Outside the domain of psychotherapy and indeed psychiatry itself, there also dwell other interpretive schemes stemming from religious, charismatic, or spiritual perspectives, as well as from ‘alternative’ perspectives found in more holistic practices such as homeopathy. 14 Finally, there are also the growing challenges from medical anthropology and sociology that emphasise the social origins of distress. Given these contending interpretations is it always possible that the explanatory authority can shift from one interpretive system to another. Such a shift occurred in American psychiatry during the 1980s and 90s, a period in which explanatory authority moved from psychodynamics to biology, privileging pharmacological over psychoanalytic intervention. The fact that explanatory authority is prone to shift can be more clearly seen if we assume a wider historical perspective and regard how the phenomenon of madness has been variously interpreted though time and space. 15 In Greco-Roman Europe a mythic-religious interpretive system held sway, in the middle ages this was superseded by a strictly religious interpretive scheme, whereas today our understanding of ‘madness’ has been entirely medicalised leaving no room for the demons and daemons of old. 16 At the present time, the apparent arbitrator between all these contending explanatory systems, as Arthur Kleinman (1991) has called them, is empirical investigation. It is the scientific credibility of any given system that decides its respectability. All manner of quantitative and qualitative methods are recruited to decide the issue of which curative system is most effective. Naturally, this arbitrator is not full-proof, as can be seen in the area of psychiatry; a discipline that is often asked to charter phenomena that cannot, at present be accurately captured in scientific formula.
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Thus, the empirical method has its confines as there will always exist beyond its bounds whole areas that do not lend themselves to being accurately measured and definitively explained. Where empiricism fails to conclusively confirm a given practice, as has been largely the case with psychoanalysis, other less certain means of confirmation are recruited to endow a given tradition with authority – that is, to provide authoritative supports where science has failed to do so. As many medical anthropologists have shown, all manner of symbols may be appropriated like tropes, dress codes, pseudo-scientific empiricism and jargon, styles of speech; all kinds of rhetoric devices are employed to fill the gaps. 17 Naturally in this paper I have no time to discuss all of these devices, but before I close I would like to touch upon one that has yet to be defined as such – namely, the device of reductionism. Reductionism, the act of reducing a chain of events to a ‘first’ cause, constitutes a rhetorical device that acts as a prop. To locate the cause in a given area is to work with a hypothesis, to act on an assumption, not an irrevocably demonstrated empirical fact. Of course this assumption is expedient if, as in the case of biomedicine, it underpins a curative tradition that often works effectively. But expedient or not, if taken as more than an assumption and held aloft as an axiom, we reify a phenomenon that exists only in abstraction. An example of how the ‘axiomising’ of an assumption can be used as a ‘rhetorical prop’ can be seen in the recent struggles within British psychiatry between two kinds of psychotherapy: psychodynamic and cognitive behavioural therapy (CBT). It appears that, at the present time at least, CBT is the preferred option. One reason in particular for this can be inferred from the manner in which CBT advertises itself to National Health Service (NHS) policy makers. To illustrate I turn to the words of one senior member of the mental health services in the NHS: What it so appealing about CBT to the managers, to the public and to the politicians is that CBT people can say that we have a treatment for depression that is as effective as taking a pill…if you take 6 pills in 6 sessions you can expect this kind of result and if you take another 10 pills then you can have another kind off result. It is all very neat, it is really about the way it presents itself. It speaks in medical terms about ‘causes’ and ‘cures’ and this pleases the NHS officials and politicians. It offers treatment for ‘discrete’ conditions – depression, anxiety stemming form discrete causes. But of course in clinical practice very often people rarely present with neat depression it is not an analogous to a broken leg or a headache or whatever – the reality tends to be much more complicated. The case with physical
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medicine I am sure physicians say it not as neat as it appears. But speaking in the medical model, ignoring these complexities, reducing symptoms to clear causes [faulty cognitive patterning] CBT manages to say what people want to here. During my fieldwork I found these complaints to be echoed by a range of mental health practitioners within the NHS. Surprisingly, similar reservations were also voiced by certain CBT practitioners. As one such informant commented to me: it does seem that CBT increasingly markets itself in ways not entirely congruent with the facts. If we enjoy higher success rates than other therapies this might be because it is easier to study cognitive therapy than the psychodynamic options. These studies are taken to suppose that the CBT model of the mind is correct – things are presented as more simple than they actually are, and while this keeps CBT on the wards the oversimplification some-times makes me feel uneasy. Cognitive behavioural therapy sells its efficacy by many devices, some rhetorical some not. A non-rhetorical device would be the act of making research-based claims that CBT enjoys better outcome rates for certain mental disturbances than do psychodynamic or drug therapies. A strictly rhetorical device, on the other hand, would be an act such as making either implied or overt claims about the causal origin of any given complaint, claims that have no such empirical backing. Such implied reductionism can be inferred from CBT’s concept of the person, and the manner in which CBT advertises this concept. For instance, CBT speaks of persons as being ‘hard-wired’ to behave in particular ways, while underplaying that such wiring is itself an epiphenomenon. That is, rather than stressing that such wiring constitutes a ‘primary’ cause that is not beyond influence such causes are often rhetorically allowed to appear as first or ‘real’ causes of distress. This attitude can be observed in certain textbooks of CBT that tend to ‘axiomise’ what are essentially assumptions, making the focal point at which alleviative action is directed appear more like a ‘first’ than ‘primary’ cause. If CBT’s representation of aetiology fails to capture the complexity at the heart of the matter, it nevertheless captures the attention of policy makers within the NHS. As many informants claimed, the models of mental illness most preferred by NHS officials are those that speak of definite causes engendering definite symptoms that, in turn, can be successfully and unequivocally treated. Such clear curative projects are what officials like to institute as they appeal, as another informant
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claimed, to a ‘traditional view of illness particular to the biomedical model … and traditional models are what politicians will pay for.’ Thus to cast one’s system in traditional aetiological terms confers an authority which, if supported by relatively high success rates, is sure to give it a competitive edge over systems less comfortable with the reductionist rhetoric. To turn now from this illustration, if we agree that any study of the matter of aetiology must be regarded in this wider social context of competing curative discourses, it is possible to suggest that the reluctance of certain curative traditions (e.g. psychoanalysis) to jettison often tacitly held ideas of ‘real’ or ‘first’ causes is, in part, due to a reluctance to remove an important prop. Such props, if believed by practitioners, policy makers, or a sufficient body of users, endows a given tradition with considerable authority. From this perspective, we identify one important factor among many that may account for reductionist tendencies in curative traditions. This perspective looks not to the psychological characteristics of the practitioners involved, nor the power dynamics between medicine and state, but to the competitive social forces at play that threaten the legitimacy of the curative system. Thus holding onto reductionism can be interpreted in terms of the interests of the curative tradition itself with its ongoing struggle for explanatory authority, status, and survival amid a contending sea of possibilities. In sum, although most practitioners within mono-causal systems think in terms of what I have called primary causes, from their practice we infer a reluctance to jettison ideas of first causes. I have stressed this to be particularly the case in certain psychotherapeutic discourses. This reluctance to relinquish the rhetorical device of reductionism, in part, has its origins in the authority reductionism confers. In addition, this authority is evermore needed in a society comprising many disparate traditions all of which are contending to explain and treat the one symptom configuration.
Notes 1
Margaret Lock and Nancy Scheper-Hughes, “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent.” In Handbook of Medical Anthropology, edited by Carolyn F. Sargent and Thomas M. Johnson (Westport: Greenwood Press, 1996), p. 46. 2 Joyce McDougall, Theatres of the Mind (London: Free Association Books, 1996), p. 7. 3 C. Wright Mills, The Sociological Imagination (New York: Oxford University Press, 1959), p. 9. 4 An immediate objection here would be that our formulation ignores the fact that Freud accounted for wider social influence by means of his idea
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of superego. See, for example, Charles Rycroft, A Critical Dictionary of Psychoanalysis (London: Penguin, 1968). This objection can be easily met by noting that this concept was restricted in its acknowledgement of social forces: while it might have recognised social mores and how they impacted on psychological dynamics, it did not acknowledge the impact of wider social institutions (economic, political, wider kinship, legal, religious etc.) on psychopathology of individual life. Thus the notion of the superego treated the relevance of social influence only in a limited sense (in the sense that is contains one’s internalised social conscience), not in the sense that it acknowledged the wider influence of social institutions. 5 This comment does not apply to those belonging to what is known as the cultural school. Theorists such as Erich Fromm (1942), Karen Horney (1950), and Harry Stack Sullivan (1953), all tried to integrate into their thinking the sociological perspective – that is, to account for mental distress both in psychological and sociological terms. Jean Miller (1976) is another such theorist who primarily locates the source of in this case women’s distress in an oppressive society – her therapy is about enlightening patients to the social origins of their discontent. 6 As to whether this ignoring is helpful to patients is a matter of some contention, however it might be noted in passing that if internal causality is assumed when external causality is the case, the patient will erroneously assume responsibility for things over which he or she has little control, which in turn might entail effects less curative than harmful. 7 Erich Fromm, Freud’s Mission (New York: Grove Press, 1959). 8 For an example of multi-causality at play I direct the reader to Victor Turner’s (1967) study The Forest of Symbols. This work emphasises in particular the social origins of distress. 9 I am thinking particularly of the psychiatric day-centre at the Warneford Hospital, Oxford, England, where I carried out an observer placement during 2004. 10 These reflections have their basis in the fieldwork I have been conducting among psychotherapeutic and psychiatric communities in London. The data is derived from over 30 informal interviews I conducted between Oct 2003 and Oct 2004. 11 See the extended discussion in Jone Cassell, ‘On Control, Certitude, and the “Paranoia” of Surgeons’, in Culture, Medicine, and Psychiatry. 11(1987): 229-249. 12 It could be objected that with the rise of global industrialisation and modernisation no such ‘homogenous communities’ today exist. I believe such thinking might be overstating the case, for although it is certain that more communities than ever before have access to a selection of different curative options, it is also true that ease of access is not universally shared to the same extent. Middle class individuals living in North London or
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upper Manhattan, will undoubtedly have more curative options open to them than current day members of the Yanamamo of Brazil or the Sambia of Papa New Guinea. However this is not to say members of such groups have no such option, rather we speak of degrees of accessibility. Thus when we speak of homogenous and heterogeneous societies we must admit of referring to ideal types. 13 Tanya Luhrmann, Of Two Minds: The Growing Disorder in American Psychiatry (New York: Alfred A. Knopf, 2000). 14 Thomas Csordas (1990). 15 Writers who has commented on this area are Roy Porter, Madness: a Brief History (Oxford: Oxford University Press, 2000) and Edward Shorter, A History of Psychiatry. From the Era of the Asylum to the Age of Prozac (New York: Wiley, 1997). 16 Roy Porter, Madness: A Brief History (Oxford: Oxford University Press, 2000). 17 The authors I refer to here, and the papers in which their comments can be found are: Thomas Csordas, “Somatic Modes of Attention,” in Cultural Anthropology, 8(2) (1993): 135-156; Arthur Kleinman, Rethinking Psychiatry (New York: Free Press, 1996); Marianne Roseman, Healing Sounds from the Malaysian Rainforest: Temiar Music and Medicine (California: University of California Press, 1991); and, finally, Victor Turner, The Forest of Symbols (London: Cornell University Press, 1967).
Bibliography Cassell, Jone. ‘On Control, Certitude, and the “Paranoia” of Surgeons’, in Culture, Medicine, and Psychiatry. 11(1987): 229-249. Csordas, Thomas. ‘Somatic Modes Anthropology, 8(2) (1993): 135-156.
of
Attention’,
in
Cultural
Dow, James. “Universal aspects of symbolic healing: a theoretical synthesis.” American Anthropologist. 88 (1986) 56-69. Fromm, Erich. The Fear of Freedom. London: Routledge, 1952. Fromm, Erich. Sigmund Freud’s Mission. New York: Grove Press, 1959. Helman, Cecil. Culture, Health, and Illness. London: ButterworthHienman, 1996.
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Horney, Karen. Neurosis and Human Growth: A Struggle Toward SelfNeurosis. New York: Norton, 1955. Kleinman, Auther. Rethinking Psychiatry. New York: Free Press, 1991. Lock, Margaret and Nancy Scheper-Hughes. “The Mindful Body: A Prolegonmenon to Future Work in Medical Anthropology.” Medical Anthropology Quarterly, 1, 1 (1987): 6-41. Lock, Margaret and Nancy Scheper-Hughes, “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent.” In Handbook of Medical Anthropology, edited by Carolyn F. Sargent and Thomas M. Johnson. Westport, Greenwood Press, 1996. Luhrmann, T.M. Of Two Minds: The Growing Disorder in American Psychiatry. New York: Alfred A. Knopf, 2000. McDougall, Joyce. Theatres of the Body. London: Free Association Books, 1996. Miller, Jean Baker. Toward a New Psychology of Women. London: Penguin, 1976. Porter, Roy. Madness: a Brief History. Oxford: Oxford University Press, 2000. Roseman, Marianne. Healing Sounds from the Malaysian Rainforest: Temiar Music and Medicine. California: University of California Press, 1991. Rycroft, Charles. A Critical Dictionary of Psychoanalysis. London: Penguin, 1968. Shorter, Edward. A History of Psychiatry: From the Era of the Asylum to the Age of Prozac. New York: Wiley, 1997. Sullivan, Harry Stack. The Interpersonal Theory of Psychiatry. London: Tavistock, 1955. Turner, Victor. The Forest of Symbols. London: Cornell University Press, 1967.
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Note on Contributor James Davies earned his doctorate in social anthropology from the Department of Social and Cultural Anthropology, University of Oxford. He is also a practicing psychotherapist within the NHS in Britain.
The Social Construction of Disease: Why Homosexuality isn’t Like Cancer Matthew McGrattan Abstract In this paper I shall be concerned with what I shall call epistemic constructivism about disease, that is, the view that the belief that a condition is a disease reflects the socially and culturally relative values of a particular society rather than any objective underlying facts. I shall argue that, while arguments proceeding from specific case studies often appear weak, convincing arguments can be made for this constructivist position if understood as a form of inference to the best explanation. However, despite the success of arguments of this type with respect to specific individual conditions such as homosexuality or drapetomania no general conclusions follow. Any such move would need to argue inductively from specific cases to general conclusions about all diseases but would fail as the features which justify the initial inference to best explanation in such cases are absent in the majority of cases. Such features include the presence of socio-historical variation in belief, absence of alternative naturalistic explanations for such variation, lack of consensus about the etiology or pathology of the condition, and so on. I shall conclude that arguments based on case studies fail to support any more general form of constructivism with respect to disease. Keywords: Social construction, disease, induction, inference to the best explanation. 1.
Introduction
There are several major schools of thought concerning normative questions in medicine and psychiatry; concerning the distinction between normality and health on the one hand and abnormality and disease on the other. These schools can be grouped under two main headings which we might label ‘naturalism,’ the view that there are objective natural facts about health norms, and ‘constructivism,’ the view that the norms of health are products of contingent human value judgements. This paper is concerned with one particular form argument, based on case studies, which is invoked in support of the constructivist position. I shall argue that this argument fails as, when the argument is analysed in detail, it rests on certain untenable claims about the degree to which the putative disease conditions described in these cases studies resemble other diseases. I shall
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argue that these case studies only support the view that the particular conditions described, rather than all diseases, are socially constructed. A. Naturalism Naturalists hold that disease states can be defined in objective natural terms that can be specified independently of the value judgements individuals or societies make with respect to a putative disease condition. A number of different naturalist models for disease exist, for example: 1. Patho-morphological: disease can be defined in terms of identifiable changes in body morphology. Xavier Bichat (1777 1802), for example, associated disease with changes in tissue pathology; Rudolf Virchow (1821 - 1902), similarly, associated disease with particular changes in cellular morphology. 2. Teleo-functional: body parts have specific functions determined by the selective history of the lineage of which the organism is part. The evolutionary history of a species determines what counts as, for example, a well-functioning heart or liver and disease can be identified with malfunction. 3. Statistical: diseased individuals are those who deviate from statistically determined population norms. These views are associated with the work of biologically-minded philosophers of science and with the broader biomedical model developed by the “Western” medical sciences since at least the Renaissance. However, by far the largest recent body of literature concerned with the disease-question – i.e. with our understanding of the norms of human function, health and disease – springs neither from philosophy or medicine. Instead, there is a large corpus of work in this area that has been produced by social scientists primarily sociologists and medical anthropologists but also including medical historians and critics of psychiatric medicine influenced by social science perspectives and methodologies. B. Value-centred Approaches This body of literature rejects the view that there are straightforward, objective, historically and culturally universal norms of human functioning. Instead, they claim, the norms of health are socially constructed. According to this view, what counts as disease and what counts as health are historically and culturally relative, subjective and entirely contingent products of social and cultural factors. There are no objective natural facts about disease. Rather disease occurs when some putative condition is identified as being negatively valued either by individuals or by socio-cultural groups. While naturalist approaches are generally more common among medical professionals and philosophers working in the field the value-driven approach is widespread and may
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even be the orthodox position among sociologists and anthropologists working on medicine and psychiatry. Social constructivists adopt a particular value-centred approach arguing that “the physician creates illness just as the lawmaker creates crime ... illness is not biological but social, stemming from current social conceptions of what disease is.”1 A crude way of characterising the constructivist approach would be to say that the values embodied in the beliefs and practices of a particular socio-cultural group are manifested in the distinctions they make between normal and abnormal states. Furthermore, these distinctions in some sense make it the case – through a process of labelling or definition – that a particular state of affairs is normal or abnormal. The social constructivist argues that the boundaries between health and disease, as understood in both medicine and psychiatry are, in some non-trivial sense, created rather than discovered. My concern here will not be to show that constructivism about disease is false, but that one particular widely advanced, empirically driven, argument for constructivism, what we might call the Argument from Case Studies, fails. 2.
Social Constructivism
Ian Hacking has listed over sixty different types of “fact” that have been presented as socially constructed, including “emotions, facts, gender, homosexual culture, illness, literacy, nature, quarks, reality, urban schooling, Zulu Nationalism, deafness, serial homicide, [etc.]”2 This is an extremely heterogeneous list! In what respect can all of these things be said to be socially constructed? Hacking himself identifies several key claims, one theoretical and two “motivational” rather than substantive, which commonly appear in the social constructivist literature. If we consider some hypothetical domain of facts X, the constructivist, according to Hacking, says of X that: 1. X need not have existed or need to be at all as it is. X, or X as it is at present, is not determined by the nature of things, it is not inevitable. 2. X is quite bad as it is, [and] 3. We would be much better off if X were done away with, or at least, radically transformed. It is the first of these claims, the non-inevitability claim, which is central to social constructivism as a theoretical position about the nature of normative distinctions in medicine. Claims about non-inevitability can be read in various ways. If all we have in mind is that X-facts are contingent, rather than necessary, then social constructivism about many phenomena seems trivially true. If, for example, the first proto-humans had all been wiped out by a massive asteroid impact approximately 400,000 years ago
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then it would indeed be true that Zulu Nationalism would not have existed. The existence or otherwise of Zulu Nationalism (and a great many other items on Hacking’s list) is a contingent fact – there are not Zulu Nationalists in all possible worlds. The social constructivist model, however, is not intended merely to point out that certain facts are only contingently true. Rather, the constructivist presents an account of how a particular phenomenon came to be the way it is – or came to be believed to be the way it is – which explains its non-inevitability. According to this view: what we regard as “truth” (which of course varies historically and cross-culturally), i.e. our current accepted ways of understanding the world, is a product not of objective observation of the world, but of the social processes and interactions in which people are constantly engaged with each 4 other. There are a number of levels on which the investigation of scientific, or other apparently factual, areas of discourse can take place. These include, but are not limited to, the following broad categories: 1. Ontological/Metaphysical. What sorts of things exist in the world? What is the nature of their existence? 2. Epistemology and the Sociology of Knowledge. What can we know about the world? To what extent are the truths known (or knowable) in any given society influenced (or determined) by social, economic, political, cultural, and ideological factors? Similar questions hold for any false statements erroneously believed to be true. 3. Individual and social ethics. What ought we to do? What types of treatment should a doctor, for example, provide, or what types of scientific research ought, or ought not, to be carried out? An individual advocating a constructivist position can argue that constructivism is true at any or all of these levels. Constructivism at level three, for example, would amount to an advocacy of some form of moral relativism. Similarly, at level two, it would amount to epistemic relativism, the view that the canons of rationality and of good scientific methodology are not universal. Instead, such canons are viewed as culturally, socially and historically contingent; one possible epistemology among many, and further, that there is no fact of the matter as to which account of warranted belief is the best, or the correct one. A realist about any of these would claim on the one hand that there were genuine (and presumably epistemically accessible) objective
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moral facts and on the other that there were universally applicable common standards of rational warrant and genuine facts about whether a particular belief was known (as well as merely believed) and facts about the appropriate canons of rationality and standards of scientific methodology. It is primarily with constructivism at the first and second level, what we might call metaphysical constructivism and epistemic constructivism, with which this paper is concerned and which we might spell out in more detail as epistemic constructivism and metaphysical constructivism. Epistemic constructivism is the view that the beliefs (or some sub-class of beliefs) prevalent in a society are primarily, or even solely, to be accounted for by referring to social, economic, cultural and ideological factors. Some degree of epistemic constructivism is clearly true. Any explanation of why, for example, communism was much more prevalent in 1950s Leningrad than it was in 1950s Los Angeles will clearly appeal to social and cultural factors rather than, say, to the possibility that each and every member of these social and cultural groups independently assessed – perhaps via a close reading of the works of Marx, Engels and Adam Smith followed by a detailed consideration of moral and pragmatic considerations – the viability of capitalism versus Marxist-Leninism and, by some miraculous coincidence, it simply turned out that all of the communists were located in one place and the capitalists in another. Metaphysical constructivism is the view that facts themselves (or some sub-class of facts) are socially constructed. This is prima facie plausible in some cases. Gender, for example, is one widely cited example of a phenomenon that has been claimed to be a social construction. If, for example, the concept of masculinity in a particular society involves strength, stoicism, relative imperviousness to physical pain, aggression, physical competence, and a relative lack of concern for physical appearance, then it is easy to see how the wide acceptance of this concept might lead us to bring up male children to embody some or all of these virtues. The very fact that the social group within which the child is raised, the child’s parents and the child himself all share the belief that maleness involves all of these features makes it true that the child (and most other male children) comes to be male in this particular historically and culturally specific sense of maleness. It is not just that there is a widespread belief that men are a certain way; it is that the very prevalence of the belief makes the belief true. Constructivism, in this sense, makes a substantive metaphysical as well as epistemological point; it is not just that we seek a socio-cultural explanation for the etiology of beliefs, we seek a socio-cultural explanation for the nature of reality. Both of these senses of social construction can come in local and global forms. The local constructivist perspective might maintain that some particular area of discourse or another is epistemically or metaphysically constructed but also accept that there may be other areas of discourse for which, say, a non-social explanation for the nature of belief
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or for the nature of reality itself, may be appropriate. The global constructivist perspective, on the other hand, is committed to universal constructivism. Every kind of putative fact and every belief about such facts is subject to the same kind of constructivist explanation. Here, I am primarily concerned with local constructivism with respect to standards of disease and health rather than global constructivism (although there are advocates of constructivism with respect to disease who would also advocate a similar global view). 3.
The Social Construction of Disease
Constructivists with respect to disease typically hold that both epistemic and metaphysical constructivism are true of disease and health. Although among those who advocate such a view there is no single, universally accepted model for the social construction of disease and/or illness which commands consensus throughout the literature. Nor is it even the case that all of the literature stems from a single disciplinary tradition. Groups working in this area include sociologists interested in social problems and ‘deviance’, post-modernist or post-structuralist theorists influenced by Foucault, and those working in the field of sociology of scientific knowledge (loosely, in the tradition of the Edinburgh ‘strong programme’). In addition there is also a general antipathy towards naturalist/objectivist accounts of disease (and sympathy towards some type of social construction) in the work of the critics of psychiatric medicine sometimes lumped together as ‘anti-psychiatrists,’ who deny that there are unproblematic, objective mental illnesses in the sense that mainstream psychiatric medicine accepts. While there is no single such model or a single disciplinary tradition, there is a widespread use of case studies to support the constructivist claim. Typically advocates of constructivism about disease argue from epistemic constructivism about disease5 to metaphysical constructivism,6 although it is not always made clear in the literature that there is such a distinction and there can be some equivocation between the two. My concern here is to show that the types of empirically driven arguments given by constructivists for epistemic constructivism about disease (in general) fail. I will not be concerned with demonstrating that constructivism in general is false with respect to disease. Partly because, as will become apparent, I think that some (local) form of epistemic constructivism is true with respect to some specific conditions. Social constructivism about disease is often rapidly dismissed in the more naturalistically inclined literature, not least because at worst the arguments can appear extremely weak – arguing, for example, from the mere presence of variation to the conclusion that the facts are social constructions. Arguments for constructivism typically invoke a contrast with naturalism: if naturalism is false, by extension, constructivism is true. Peter Sedgwick, for example, says:
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Concepts of illness were in use among people for centuries before the advent of any reliable knowledge of the human body, and are still employed today within societies which favour a non-physiological (magical or religious) account of the nature of human maladies … Sickness and disease may be conceptualised, in different cultures, as originating within bodily states, or within perturbations of the spirit, or as a mixture of both.7 And similarly, Vivien Burr draws attention to the fact that: The cultural and historical specificity of biomedicine is also clear ... the biomedical model is one that is not universal ... This [and the rise of alternative medicine in the West] should caution us against the view that our own predominant biomedical view of disease is the right one and all others false. 8 Sedgwick’s point is that the fact that the concept of illness exists in cultures with radically different medical models is supposed to show that it cannot be true, as a matter of conceptual analysis, that illness can be defined as a narrow physiological state as (allegedly) described by Western biomedicine. Similarly, Burr wants to caution against simply accepting the Western biomedical model as correct – it is not the only model out there (and by implication it is no more correct than any other). However, in both cases – prior use and synchronic/diachronic variation – there is confusion here between two completely different phenomena. On the one hand, there is a question about the norms of health and disease and, on the other, there is an entirely different question about how a society explains the etiology and/or pathophysiology of a condition antecedently defined as a disease. It is certainly true that with respect to etiology and nosology there is a wide degree of variation across history and across cultures. For example, Western medicine followed, in some form or another, the Galenic humoral model until the 17th century but no longer does. This model still exists in modified form: as Yunani medicine (which is in part derived from classic medieval Arabic works such as Ibn Sina’s Al-Quanum fi’l-tibb), in the ‘folk’ medical traditions of Pakistan and other Islamic countries, and in the folk medicine of Spanish-speaking Latin America. Elements of the humoral tradition also exist , to a certain extent, in the ‘folk’ concepts of the West – old-fashioned medical advice such as ‘feed a cold, starve a fever’ or the wide-spread, yet false, belief that one catches the common cold from being cold (by venturing outside on a cold day with damp hair, etc.).9 Traditional Chinese medicine still follows a broadly humoral approach, with health consisting in the balance of internal ‘forces’ with each other and with the external environment. Traditional
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Tibetan medicine, driven by a Buddhist conception of the mind-body relationship, tends to interpret physical symptoms as signs of underlying mental conflict (rendering almost all illnesses psycho-somatic), and so reverses the mind-body priorities found in Western medicine, and so on. One could continue on, citing cultures in which illness is caused by gods angered at the transgression of a deeply held tribal taboo, those in which illness is the result of malevolent spells being cast by jealous neighbours, and so on, more or less ad infinitum. Medical anthropology throws up almost as many models of disease and illness as there are cultures. Nevertheless, the constructivist is wrong to suggest that the existence of such varying models for the etiology of illness show that illness cannot be some type of bodily state specifiable in terms of morphology. It is certainly true that such an identification cannot be analytical and if proponents of a morphological model of disease were claiming that such a model was a priori true, as a matter of conceptual analysis, then they would be wrong, and the historical and anthropological data would support the view that they would be wrong. However, the identification of illness with some morphology or other is precisely not a conceptual claim, but rather an a posteriori empirical claim much like the claim that water is H2O. It is normally accepted as uncontroversial that water is in fact H2O even though there was a time when we did not know this was the case. It is still possible to have the concept of water and yet fail to have the concept of H2O and fail to appreciate the truth of the identity claim linking the two. Similarly, advocates of the ‘disease-asmorphology’ view need not worry that there are people who have the concepts of disease and/or illness without sharing the further belief that some identity claim connecting disease or illness with a type of pathophysiological state is true. 4.
Standard Case Studies
Despite these doubts, there does seem to be some substance to the constructivist appeal to the case study. Typically, a slight idealized case study arguing for the social construction of disease proceeds as follows: 1.
A demand for explanation: Attention is drawn to the fact that there is some putative disease condition about which lay and medical opinion varies either synchronically across cultures and/or diachronically across history. Perhaps there has been a sudden increase or decrease in the incidence of a particular diagnosis – think here, for example, of Attention Deficit Hyperactivity Disorder (ADHD), which has seen a massive increase in diagnosis over the past forty years. Or perhaps a putative condition's disease-status has altered over time. In this context, a particularly commonly cited example is that of homosexuality which became classified as a disease (rather
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than a ‘moral failing’) during the mid-to-late 19th century and which ceased to be classified as a disease by the American Psychiatric Association in the early 1970s. It is variation of this type that requires explanation. A denial that a factual explanation can be given: It is claimed that there is no available non-social explanation that can be given to explain the synchronic and/or diachronic variation identified above. Often the argument for this point appeals to the apparent invariance (over the time period or cultures in question) of any relevant objective ‘underlying’ facts that might be used to provide such an explanation. In the case of homosexuality, for example, one might argue that little changed about homosexuals or homosexual behaviour over the period from the mid-1960s to the mid-1970s in which the definition of homosexuality as a disorder changed. In the case of ADHD, one might argue that there is little evidence that children (and particularly male children) changed physically over the period in which diagnoses of ADHD multiplied exponentially (despite of the fact that it is often claimed that ADHD has a biochemical or neurological etiology). Provision of an alternative social explanation: The social constructivist then advances an alternative social explanation that accounts for the synchronic and diachronic variation described above. Typically such explanations appeal to the way that changing social values are reflected in social definitions of deviance. Such models present deviance as being the outcome of social processes – for example, as arising from the interactions of competing interest groups – and then describe the ways in which certain types of deviance become medicalized. Where medicalization is the general term used in the sociological literature for the process by which a social problem – some condition claimed to be ‘deviant’ by some individual or interest group – becomes defined as a specifically medical problem and adopted as a diagnosis by the medical establishment.
A. ‘Inference to the Best Explanation’ These case studies can best be used to support the claim that disease is a social construction if we understand their structure as presenting an implicit argument in the form of an abductive claim or instance of ‘inference to the best explanation.’ On such an interpretation, the constructivist is arguing that the best available explanation for the patterns of changing diagnostic classification with respect to a condition is that the classificatory beliefs of the medical establishment are not tracking any changes in objective facts, rather they track changing social values
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(because they are in a sense products of them). Such abductive arguments have the following general pattern: A1:
A2: A3: AC:
If the classification of condition C as a disease was the result of socio-culturally relative values then we ought to expect that: a. The disease status (or incidence) of C will vary either over time or across cultures (or both). b. The variation at [a] will appear to track changes in social values. c. No straightforward natural explanation of the variation at [a] will exist. Condition C does in fact exhibit features [a], [b] and [c]. The best explanation for A2 is that the classification of C as a disease is a social construction, therefore: (Probably) C is a social construction.
B. Homosexuality The structure of this argument is rarely if ever made explicit in the literature. Instead, a detailed history is usually provided showing how: 1. the classification of homosexuality as a disease is a culturally and historically local phenomenon specific to Western culture in the period between the late 19th and 20th centuries; 2. that considerable historical variation in the treatment of homosexuality exists both across the world and over time; 3. that the original classification of homosexuality as a disease reflected the increasing tendency in the late 19th century of the medical profession to annex previously difficult moral problems as diseases coinciding with the rise of the biomedical establishment and the replacement of priests in many areas of social life with doctors; 4. that the declassification of homosexuality as a disease in the early 1970s reflected increasing gay-rights activism, growing social tolerance and a decline of traditional religious values, and so on; 5. that no ‘scientific’ non-social explanation can be given for the changes in classification. From such data it is usually concluded that homosexuality was not objectively a disease but rather that the classification of homosexuality as
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a disease is best explained as a socially constructed reflection of social values. 5.
Arguments Against the Constructivist Perspective
Case studies like this can be used to support the view that diagnostic beliefs are socially determined with respect to a specific condition. However, the further claim is then usually made that such case studies support the general epistemic constructivist claim. In order for this general claim to be convincing, some kind of inductive argument would need to hold true: I1
I2 IC
It is the case that the empirical facts with respect to some putative disease support the view that the beliefs of medical professionals and lay people alike reflect changing social values rather than any objective, value-free and/or natural facts and therefore the classification of the alleged disorder as a disease is a social construction. And, that all other diseases are sufficiently similar to these particular individual case studies that we also ought to view these diseases as social constructions.
However, both the facts of the case studies and the inferences drawn from them can be questioned. A. Social Causation and the Role of Environment Individuals do not manifest as diseased independently of the environment in which they live. The incidence of a disorder can be affected by a changing social environment without being constituted by the value-judgements made by the society. Disorders can be socially caused and/or the result of the relationship between an individual and the environment (social, or otherwise) that they are within. The metabolic disorder phenylketonuria (PKU), for example, in the days before routine post-natal testing of newborns, inevitably led to mental retardation, seizures and abnormal growth patterns among other symptoms. This is because people with PKU lack an enzyme which enables them to process the essential amino acid phenylalanine and the ‘hyperphenylalaninemia’ that results has toxic effects. It is the combination of the lack of the enzyme hydroxylase (which breaks down phenylalanine) and the presence of phenylalanine in the dietary environment of the infant that leads to the symptoms. As a result, infants
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who test positive for PKU are treated by dietary management. This has led to an almost total disappearance of the symptoms of PKU from Western societies. But this change does not reflect a decrease in the numbers of phenylketonuric babies being born or in the disease-status of PKU. Rather, controlled changes in the children’s environment prevent the symptoms of the disease manifesting.10 Similarly, some explanations for the rise of ADHD have appealed to the change in social environment within which children exist, including different class-room environments, changes in teaching style and teaching materials. Supporters of ADHD as a diagnosis have claimed that the change in social environment has led to children predisposed to ADHD manifesting symptoms that they would not otherwise have manifested. The constructivist is correct that children have not changed but is incorrect that nothing else has changed. Their environment is different. ADHD, on this account, may be socially caused but its status qua disease is not socially constructed.11 The relationship between social factors and disease incidence can be extremely complex and the constructivist needs to be wary of inferring from the covariance of disease incidence with social factors to the claim that the disease itself is a social construction. As well as straightforward cases of social causation, there can be much more subtle interactions between social phenomena and disease. Men in Western societies, for example, are overwhelmingly more likely to suffer from a number of conditions, including heart disease and cancer but also including accidents and a wide range of other chronic conditions. Some explanations of why this is appeal to the nature of socially constructed gender roles and the connection between the nature of masculinity and the tendency to indulge in high-risk lifestyle behaviour and to make less use of health-care services. In such a case, there is a relationship between a social factor widely agreed to be socially constructed, gender identity, and poor health.12 In a parallel case, some authors have drawn attention to the radically different way that men in Madras understand gender identity and the incidence and treatment of HIV and AIDS. The standard Western model of homosexuality – men who identify as homosexual and who exclusively or primarily have sex with men – does not apply in Madras. Instead among Madras men there are groups who regularly have sex with men (known as ‘panthi’ in the local slang) but who do not identify as homosexual in anything like the Western sense and whose patterns of sexual interaction do not fit comfortably with the Western model, including their use or non-use of contraception, the sexual practices in which they engage, the people with whom they have sex, the likelihood of them contracting HIV and of spreading the virus to women. This has a direct impact on HIV infection rates and on treatment and prevention models since the (socially constructed) gender identity of these men leads them to exhibit very different patterns of sexual behaviour from that
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prevalent in the West (and it is the Western model which has dominated approaches to HIV treatment among men likely to acquire the virus through male-male sexual contact).13 In such cases there is a set of factors widely agreed to be socially constructed (even by many generally sceptical about constructivism in other areas) and where these social factors affect the etiology and prevalence of the diseases under discussion and yet where we would not say that the condition itself was a social construction. B. Alternative Non-social Explanations Even in some of the widely cited constructivist cases, the ‘facts’ are by no means unquestioned. Some members of the APA, and in its own literature, the APA itself, explain the history of the transition from the view that homosexuality is a disease to the removal of homosexuality from the Diagnostic and Statistical Manual in terms of the arguments presented to the APA and in the medical literature which appeal to straightforwardly ‘objective’ factual claims. The arguments included evidence produced by the Kinsey Report in the late 1940s and by the National Institute of Mental Health Task Force on Homosexuality in 1969 suggesting that homosexuality is not correlated with diminished well-being or life expectancy, i.e. with increased mortality or morbidity, and that on standard, independently developed, measures of mental health homosexuals are as well-adjusted and content as heterosexuals. Such ‘factual’ claims were marshalled to support the conclusion that homosexuality ought to be declassified.14 Of course the fact that the decision to remove homosexuality from the DSM was taken on a postal ballot of APA members does suggest that something atypical was going on in this case. It is not normally the case that scientific decisions are explicitly taken on a majority vote. Such considerations suggest that the constructivist interpretation of such case studies is not straightforwardly true or universally accepted. The initial premise in the constructivists ‘inductive’ argument is far from established. 6.
Other Problems
The number of diseases which have been examined in this type of investigation is relatively small. The same cases – ADHD, post-traumatic stress disorder, drapetomania, homosexuality, masturbation, menopause, Soviet psychiatric diagnosis of dissidents, schizophrenia in general, and so on – crop up again and again. An inductive argument from a relatively small number of cases to general conclusions covering a vast and highly heterogeneous range of disorders is hardly convincing unless the constructivist can show that in important respects the wider group of disorders are similar to the model constructivist cases.
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A. Behaviour versus Somatic conditions However, such model cases are by no means typical of the vast majority of disorders and consist almost entirely of psychiatric diagnoses and a very small number of disorders associated with ‘life events’ such as menopause, menstruation, or puberty. The definitions of such disorders are almost entirely concerned with behaviour. Furthermore, in almost all of these cases no undisputed etiological or pathological model exists. In almost none of the cases discussed is there widespread agreement with respect to the cause of the disorder. For example, we can contrast ADHD where, as already mentioned, a vast number of competing models exist, with tuberculosis or malaria where the etiology or pathology of the disorder is not disputed. The same problem applies equally to many of the other cases cited; schizophrenia is another disorder where a wide range of competing models exist in the constructivist literature. B. Lack of variation The number of physical (rather than psychiatric or behavioural) conditions where even the presence of variation in the constructivist model holds true is astonishingly small. The Papago Indians of Arizona have historically suffered from high levels of obesity and it has been reported that the Papago norm was such that anyone not verging on clinical obesity was seen as undernourished. Similarly, at least one South American tribe are so widely infected with dyschromic spirochetosis (which causes coloured spots on the skin) that individuals without the characteristic spots are seen as disordered.15 However, with the exception of these two examples (both of which concern relatively mild disorders and where the primary distinction drawn is aesthetic rather than medical) it is extremely difficult to find any other example in the literature where any mildly serious (or worse) physical disorder is classed as a disease by one culture but is not classed as such by another. The classic diseases of the Western biomedical model such as malaria, tuberculosis, ischaemic heart disease, and lung cancer are physical disorders with a widely understood pathophysiology and etiology. Their status as diseases is almost universally undisputed and these examples are rarely addressed in the constructivist literature. C. Reliability and Validity Equally seriously, for the advocate of social construction, many of the disorders on the constructivist list of exemplars are often subject to ‘internal’ criticisms from within the medical sciences. Far from being uncontroversial examples of standard medical practice they are often accused of failing to live up to the internal standards that medicine sets for
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itself. For example, it is a standard expectation that diagnoses ought to be both reliable and valid. Reliability: concerns the consistency with which diagnoses are employed by different clinicians or on different occasions. If two psychiatrists met the same patient, we would expect both to make the same diagnosis. Similarly we would expect a patient to be assigned the same diagnosis on two different occasions... 16 Validity suggests that the diagnostic category is a distinct entity with clearly defined boundaries and that diagnosis should coincide with a stable prognosis and make useful predictions about treatment and outcome. However, in many of the cases used by constructivists, this is not the case. Within the same state in the USA rate of diagnosis of ADHD, for example, can vary by as much as a factor of ten from county to county and between countries diagnosis can vary from as little as 0.5% of children in one country to as much as 17% in another. Similarly the same patients will be diagnosed differently depending on which doctors are carrying out the diagnosis. Criteria for diagnosis can vary across cultures and different medical groups will place different emphasis on particular symptoms, stressing hyperkinesis in one case or stressing inattention or social disruption in another. Comorbidity, the overlapping presence of two or more diagnostic categories, and the possibility that there is no distinct disease entity being measured is also a continual problem with ADHD overlapping with (and possibly not being distinct from) conduct disorder, anxiety disorder and major depression among others. Similarly Bentall’s book-length17 study of psychiatric medicine offers a sustained, comprehensive, and, if accurate, potentially devastating critique of the whole of post-Kraepelinian psychiatric diagnostic classification. The book argues that schizophrenia and major depression fail on both reliability and validity and that the history of psychiatric research on both conditions is riddled with methodological errors and inconsistencies. Bentall is particularly critical of cross-cultural studies that purport to show the ‘universality’ of schizophrenia and the reliability of the diagnosis arguing that in fact the studies are fatally flawed and show nothing of the kind. 7.
Conclusion
The success of the inductive argument from case studies to the general conclusion that diagnostic classification in medicine is socially constructed, relies on both the success of the individual case studies and the similarity between the disorders studied in these cases and disease in general. However, it is by no means clear that facts in all of the case studies are how they are represented in the constructivist literature nor is it the case that, even if we grant the basic facts, that the constructivist
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conclusion follows. The best explanation in some cases is simply not that the beliefs of the medical profession about the disorder in question were determined purely by social values. Even if we grant (and I am prepared to do so in some cases) that the constructivist is correct and that some diseases are social constructions the general case does not follow. The constructivist cases are highly atypical. First, they concern primarily psychiatric and behavioural disorders which do not resemble the bulk of the disorders with which medicine is concerned. Secondly, there is little evidence that the kind of story told in the case studies with respect to the process of medicalization has been mirrored in the history or anthropology of physical illness. With the exception of a tiny number of non-serious disorders – dyschromic spirechetosis, for example – it is simply not the case that any widespread variation exists with respect to the disease status of such conditions. Nor is it the case that there is any evidence that physical diseases have gone through the same social process – identification of deviance, the interaction of competing interest groups, consolidation and entrenchment, and so on – identified in the sociology of medicalization. Finally, the cases studied are not even agreed to be examples of good medical practice by the medical establishment, because they fail, regularly, to live up to minimal standards of reliability, validity and so on. It simply does not follow from an examination of a small number of atypical, methodologically suspect, ‘conflictual’ diagnoses where, contrary to the medicalization model, the diagnoses are in fact rarely settled and where continuing controversy exists with respect to almost all of them – that the conclusions drawn apply to a much larger number of entirely different conditions. Of course, most of what I have argued does not touch on the metaphysical claim – that there are no disease norms and all norms of health and disease are social constructions – except to suggest that much of the evidence adduced in support of this view does not provide the support claimed. The onus now is on the proponent of social constructivism with respect to disease to provide us with an explicit argument for metaphysical social constructivism that does not appeal to precisely the type of inductive generalisation from case studies which, as I have argued above, must fail. With respect to the role case studies can play in the understanding of our concept of disease, homosexuality is just not like cancer.
Notes 1. Eliot Freidson, Profession of Medicine: A study of the sociology of applied knowledge, (New York: Dodd Mead, 1970) 2 Hacking’s list is drawn from a quick survey of papers or books with the titles “The Social Construction of X” or “Constructing X”.
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3. Ian Hacking, The Social Construction of What?, (Cambridge: Harvard University Press, 1999) 4. Vivien Burr, An Introduction to Social Constructionism, (London: Routledge, 1995). 5. The view that the judgements made by medical professionals and laypeople that some putative condition is a disease are the product of contingent, socio-culturally and historical relative, values. 6. The view that disease itself – rather than just beliefs about disease – is the product of the same contingent, socio-culturally and historical relative, values. 7. Peter Sedgwick, Psycho Politics, (London: Pluto, 1982) 8. Burr, An Introduction to Social Constructionism. 9. As opposed to catching the cold from infection by any one a vast number of viruses including rhinoviruses, coronaviruses and adenoviruses. 10. Susanne Schweitzer-Krantz and Peter Burgard, “Survey of national guidelines for the treatment of phenylketonuria,” European Journal of Pediatrics 39 (2000): S70 - S73. 11. I should note that in citing this particular explanation of the massive increase in ADHD I am not endorsing it. Timmimi, in his book on ADHD, lists literally dozens of alternate competing explanations for the changing incidence and status of ADHD of which this is only one. Timmimi, Pathological child psychiatry and the medicalization of childhood, (Hove: Brunner-Routledge, 2002). 12. William H. Courtenay, “Constructions of masculinity and their influence on men's well-being: a theory of gender and health,” Social Science and Medicine, 50 (2000): 1385-1401. 13. Sheena Asthana and Robert Oostvogels, “The social construction of male ‘homosexuality’ in India: implications for HIV transmission and prevention,” Social Science and Medicine, 52 (2001): 707-721. 14. See, for example, The American Psychological Association, Fact Sheet, Answers to Your Questions About Sexual Orientation and Homosexuality, (Washington, D.C.: APA Office of Public Affairs, 1998), Ken Hausman, “Pioneering Psychiatrist, Psychoanalyst Judd Marmor Dies at Age 93”, Psychiatric News 39 (2004): 2, and Lynne Lamberg, “Gay Is Okay With APA--Forum Honors Landmark 1973 Events,” Journal of the American Medical Association, 280 (1998):497 – 499. 15. Both of these cases cited in Peter Conrad and Joseph Schneider, Deviance and Medicalization: From Badness to Sickness, (St. Louis: Mosby, 1980). 16. Richard Bentall, Madness Explained: Psychosis and Human Nature, (London: Allen Lane, 2003). 17. Ibid.
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Bibliography American Psychological Association. Answers to Your Questions About Sexual Orientation and Homosexuality. Washington, D.C.: APA Office of Public Affairs, 1998. Asthana, Sheena and Oostvogels, Robert. “The social construction of male ‘homosexuality’ in India: implications for HIV transmission and prevention.” Social Science and Medicine, 52 (2001): 707-721. Bentall, Richard. Madness Explained: Psychosis and Human Nature. Allen Lane: London, 2003. Burr, Vivien. An Introduction to Social Constructionism. Routledge: London, 1995. Conrad, Peter and Schneider, Joseph. Deviance and Medicalization: From Badness to Sickness. St. Louis: Mosby, 1980. Courtenay, William H. “Constructions of Masculinity and their Influence on Men’s Well-being: a Theory of Gender and Health.” Social Science and Medicine, 50 (2000): 1385 – 1401 Freidson, Eliot. Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York: Dodd Mead, 1970. Hausman, Ken. “Pioneering Psychiatrist, Psychoanalyst Judd Marmor Dies at Age 93.” Psychiatric News 39 (2004): 2 Hacking, Ian. The Social Construction of What?. Cambridge: Harvard University Press, 1999. Lamberg, Lynne. “Gay Is Okay With APA – Forum Honors Landmark 1973 Events.” Journal of the American Medical Association 280 (1998): 497-499. Schweitzer-Krantz, Susanne and Burgard, Peter. “Survey of national guidelines for the treatment of phenylketonuria.” European Journal of Pediatrics 39 (2000): S70 - S73. Sedgwick, Peter. Psycho Politics. London: Pluto, 1982. Timimi, Sam. Pathological child psychiatry and the medicalization of childhood, Hove: Brunner-Routledge, 2002.
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Note on Contributor Matthew McGrattan completed his undergraduate M.A.(Hons) in Philosophy at Glasgow University in 1996 and the B.Phil in Philosophy at Oxford University in 2000. He currently works for the Museum for the History of Science in Oxford and is completing a D.Phil in the Philosophy of Science writing on ‘The Concepts of Disease and Health.’
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Green Fingers or Pink Viagra? Female Sexual Dysfunction and Medicalisation in Contemporary Medical Discourse Katherine Angel Abstract Recent attempts to reclassify female sexual problems have generated considerable media interest, an interest entangled with the success of Viagra for male sexual problems. The medical and public debate about Female Sexual Dysfunction (FSD) opens a window onto cultural anxieties about appropriate causal frameworks for understanding sexual problems, specifically about the ontological status of conditions potentially stemming from psychological and social causes. A 1998 report on FSD sees the manoeuvring of a coalition of disciplines emphasising biological psychiatry’s affinity with scientific medicine, and distancing current work on sexual dysfunctions from psychodynamic psychiatry. The report reveals discomfort with the troubling relationship between the medical, psychiatric, psychological and social; and this negotiation of disciplinary affiliations mirrors anxieties about the ontology these various disciplines endorse. I suggest that the generation and sustaining of theoretical frameworks for medicine, common to the discipline and its cultural context, can be usefully studied in the case of contemporary controversy over the causation of sexual dysfunctions. The history of medicine’s emphasis on the production of medical knowledge and practice needs to incorporate scrutiny of the discursive production of causal frameworks both within medicine and the culture of which it is born. Keywords: Female Sexual Dysfunction, DSM, medicalisation, Viagra, medical ontology, biological psychiatry. 1.
Introduction
In January 2003, Ray Moynihan wrote an article in the British Medical Journal called “The making of a disease: female sexual dysfunction.” He claimed that “a cohort of researchers with close ties to drug companies,” encouraged by the success of Viagra, was working with colleagues in the pharmaceutical industry to develop and define a new category of human illness at meetings heavily sponsored by companies racing to develop new drugs.
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In conversation with Irwin Goldstein, a professor of urology and gynaecology at Boston University School of Medicine, and a prominent figure in recent efforts to reclassify female sexual problems, Moynihan asked about criticisms that sexual problems may not be best dealt with by doctors. Goldstein replied: “Who’s best equipped to deal with [them]? The horticulturists?” And when asked whether marketing campaigns can privilege certain views of sexual difficulties and promote some therapies over others, Goldstein said “I’m an academic clinical doctor. That’s a question for some philosopher.” 1 Who is equipped to deal with sexual dysfunctions is a core question in the debate about female sexual dysfunction (FSD) 2 ; pills, surgical interventions, talking therapies, and even a particularly intimate horticulture – Masters and Johnson’s sex therapy – have all been invoked in their treatment. What counts as an appropriate intervention, however, hinges on views of what sort of things sexual dysfunctions are and what sorts of things cause them. And the debate about FSD reveals an interesting node of anxieties about the kinds of causes that can be part of a scientific medicine – anxieties that I shall discuss here. 2.
Viagra
Sildenafil citrate, approved in 1998 and sold by Pfizer as Viagra, was the first non-invasive, non-surgical, oral medical treatment for impotence, or erectile dysfunction as it is now more commonly called (I shall henceforth refer to it as ED). 3 It soon became the most commercially successful clinical drug on record, with, according to Pfizer, about sixteen million men around the world receiving it, and nine tablets dispensed every second worldwide. 4 The advent of Viagra led to praise for the destigmatisation of a widespread problem, concern about its effects on both the male and female sexual script 5 , and debate about its economic ramifications. The UK government in 1999 advised the restriction of NHS prescriptions to men with ED arising from one of a range of specified physical causes (including prostate cancer, spinal cord injury, and Multiple Sclerosis). Men with ED “of psychological origin” would be excluded, although exception might be made for those “who are caused severe distress by impotence”, and private prescriptions would be possible, though expensive. 6 The question of the causation of ED thus became acutely relevant to treatment availability, and any stigma already attached to “psychogenic” impotence may well have been exacerbated. 3.
The Consensus Report
The location of sexual problems within psychiatric jurisdiction stems partly from the psychoanalytic influence on 20th century American
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psychiatry, but, more deeply, from the mutually entangled development of psychiatry, sexology and criminology in the last quarter of the 19th century. 7 The current Diagnostic and Statistical Manual of Mental Disorders (DSM IV) categorises sexual problems into problems with sexual desire (hypoactive sexual desire disorder and sexual aversion disorder), sexual arousal (female sexual arousal disorder and male erectile disorder), orgasm (female orgasmic disorder, male orgasmic disorder, premature ejaculation) and problems of sexual pain (dyspareunia, vaginismus) as well as sexual dysfunction due to a general medical condition, and substance-induced sexual dysfunction. 8 Recent efforts to revise these categories, however, have attracted considerable media attention. Alongside the development of research into ED, increased attention turned in the 1990s to female sexual problems, and the potential effects of Viagra on them. 9 The first International Consensus Development Conference on Female Sexual Dysfunction, convened by the Sexual Function Health Council of the American Foundation for Urologic Disease and the International Society of Impotence Research, was held in October 1998, its report published in the Journal of Urology in March 2000. 10 The Basson report, as I shall now refer to it (Rosemary Basson was the first and corresponding author) was written by nineteen authors from departments of urology, biostatistics, psychiatry, obstetrics and gynaecology, marital and sexual health, and psychology – though with practitioners in psychiatry and urology dominating. It claims that a “major barrier to the development of clinical research and practice has been the absence of a well-defined, broadly accepted diagnostic framework and classification for female sexual dysfunction;” the conference thus sought to outline a framework for female sexual dysfunction “that would include psychogenic and organically based disorders” and be applicable in medical and mental health settings, given that the DSM was not “intended to be used for classification of organic causes of female sexual dysfunctions.” 11 And yet, while it makes some significant and interesting changes to the classifications – hypoactive sexual desire was broadened to include a lack of receptivity to sexual activity; sexual arousal disorder was expanded to incorporate non-genital and subjective definitions of arousal; a new category of non-coital sexual pain disorder was added; and a personal distress criterion was included for all categories – the Basson report preserves the basic structure of the DSM classification. The high prevalence of FSD is heavily emphasised by the Basson report; it cites a rate of 43%, a figure derived from a study by Laumann et al. 12 This article – which involved a reanalysis of a slice of data from the National Health and Social Life Survey conducted in 1992 and published in 1994 13 – emphasises considerable contextual, psychological and social associations with sexual problems. 14 The authors emphasise the “salience of emotional distress on sexual dysfunction” and the ways in which
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“psychosocial disturbances affect sexual functioning,” 15 phenomena which are, however, rarely mentioned alongside the ubiquitous citation of the 43% statistic both in the medical and the lay media. 16 Moreover, despite the fact that Laumann et al. caution that their findings are “not equivalent to clinical diagnosis,” 17 invocations of the 43% statistic are rarely qualified; the Basson report concedes that the study “did not include a detailed clinical evaluation” but nonetheless repeats the statistic, without qualification, several times. 18 It also makes claims about specific forms of dysfunction on the basis of the Laumann article and the National Health and Social Life Survey from which the article is derived. Whether Laumann et al.’s claims are accurate, and whatever the motivations for the reanalysed data, 19 the effect of these repeated omissions and emphases is that a network of citations is built up in the literature, reinforcing the 43% claim, which conveys a misleading impression of consensus and factualness about prevalence. They also fail to communicate the variety of kinds of sexual problems experienced. Furthermore, they reveal a reluctance to think about psychological and social factors as correlates, or perhaps even causes, of sexual problems, thus entrenching a prior emphasis on narrow physiological causes. These potential factors are successfully obscured by a reemphasis on mechanical causes modelling itself on the rhetoric on ED: an oft-repeated mantra about ED emphasised that while cases were, until recently, attributed to emotional problems, “experts” now agree that the vast majority “have a physical basis.” 20 There are important issues here regarding the male sexual script especially, with the enthusiasm for organic explanations of ED possibly related to an assumption of personal and gender failure in cases of psychosexual difficulties. But it is also related to concerns with the troubling ontological status of illnesses stemming from psychological causes, concerns which we shall explore further below. 4.
Medicalisation and Anti-Medicalisation
The critique of medicalisation has a complex history, as well as a remarkable contemporary currency. 21 Zola provided a classic description of medicalisation as a process “whereby more and more of everyday life has come under medical dominion, influence and supervision.” 22 A multiplicity of concerns – with social control, diminishing individual autonomy, industry interests, and the need for, and safety of, technological treatments – are subsumed under the medicalisation critique. But the core concept of medicalisation is expressed by Kawachi and Conrad’s definition of it as a process “by which non-medical problems become defined and treated as medical problems, usually in terms of illnesses and disorders.” 23 Thus problems that are a normal and inevitable part of life, including those of a personal, social, political, or economic nature, or
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problems which are essentially risks, are being inappropriately transformed into medical problems or diseases requiring intensive medical scrutiny and technological intervention. 24 While the transformation claim arguably depends on an understanding of the distinction between disease and non-disease, and thus on an adequate definition of disease, notoriously hard to come by, 25 my concern here is to look at the wider ontological anxieties revealed by the medicalisation critique. 5.
Female Sexual Dysfunction and Medicalisation
Moynihan’s article with which I opened this paper problematises the category of “female sexual dysfunction.” It suggests that there may be more at work, causally, than recent classifications of FSD allow; that psychological and social experiences can affect our physical functioning; and that we should scrutinise the cultural, social, and economic influences on, and ramifications of, categorising problems as diseases. Thus many critics of the medicalisation of FSD question the identification of problems in sexual lives as dysfunctions, disorders, or diseases, especially when such problems are often associated with relationship difficulties, fatigue, stress, and socioeconomic problems rendering lack of sexual interest or response understandable and even adaptive. 26 The response to Moynihan’s article, both in the BMJ and in the wider medical and lay press, was heated. 27 A nurse therapist wrote that FSD is not a “new, pharmaceutically manufactured condition” and objected to the charge that practitioners are “only treating ‘social disorders.’” 28 A private consultant wrote that Moynihan’s article “trivializes the real suffering experienced by millions of women.” 29 And a patient wrote that women are “effectively silenced by the constant response that it is psychological (i.e. that [they are] imagining it).” 30 And yet nothing Moynihan claimed entails the view that the symptoms experienced by patients are not real, not physical, not important, not distressing, and not in need of treatment. These responses to the medicalisation critique reveal some interesting assumptions about the kind of entities admissible in an adequately scientific medicine. One assumption is that psychological factors can have no causal agency; another is that to emphasise psychological and social influences on our functioning, and indeed on medical classification, is to deny the physical reality of a condition. This excursion into the “non-physical” is thought to constitute an excursion into the non-real, since a condition’s reality is thought to be guaranteed only by the existence of a physical cause. Another assumption is that if a technological treatment of an illness exists, this treatment vindicates the “reality” and physical causation of the condition. That medical treatment and complex, psychosocial causation are seen as mutually exclusive is
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indicated in Richard Taylor Segraves’s statement that “the recent interest in biological treatment for female sexual dysfunction has emphasised the need for a system to classify organogenic sexual disorders.” 31 One could, by means of an explanation for these assumptions, invoke the historical fragility of the scientific status of sex research, wherein the emphasis on mechanical physiology provides a means to bring sexology into the scientific fold. The fragility of fields such as sexology and psychiatry, that is, might produce this emphasis on the exclusively ‘physical’. But this too is an aspect of a wider anxiety about preserving medicine’s hard-won status as a scientific endeavour, potentially endangered by the introduction of causal entities whose physical presence and agency is seen as dubious. What is more, these troubles besiege less “fragile” disciplines, surfacing in disputes regarding the immune system, peptic ulcers, and cancer, for example. The desire to limit causal explanations to ones involving physical causes (understood as excluding the psychological, the social, the contextual or relational) manifests itself in various sites of the FSD debate. One is the rhetoric employed about sex, represented as wholly separate from the context, relations, and lives in which it is embedded. The phenomena of diagnostic overlap in female sexual problems, and the complexity of female sexuality, are thus presented as puzzles leading to a methodological impasse. 32 Another is the discourse regarding the position of scientific medicine with respect to psychiatry, to which I now turn. 6.
Lack of Medicalisation
Feelings about the relation between medicine and psychiatry can be gleaned from statements in the medical literature about the medicalisation of sexual problems. The Basson report states that “[l]ess attention has been paid to the sexual problems of women.” 33 And John Bancroft claims that the “medicalization of sexuality has been largely restricted to the male.” 34 I shall not go into the substantial evidence against such claims here, save to note that they overlook a ubiquity of discourses in which proper sexual functioning is seen as key to individual as well as social health and order. 35 I shall point out, though, that one might be tempted to make these claims because much of the discourse about female sexuality has occurred within psychiatry and psychology, and within the psychoanalytic and psychodynamic disciplines that flowered between the 1920s and 1960s especially. But brushing aside swathes of sexuality study on these grounds assumes, both with respect to contemporary medicine and historically, that anything that is psychological or psychiatric is thereby not medical. And the question of the relationship between medicine and psychiatry is precisely the question which the debate about FSD reveals to be so problematic.
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That the Basson report can take this stance on medicalisation reveals the extent to which it forms an assertion of a particular etiological, therapeutic and disciplinary ownership of sexual problems – namely that of scientific medicine – to be contrasted with psychiatry and the murky world of sex therapy. The report can be read as an attempt to relocate female sexual problems within the field of medicine “proper” and not the troubled lands of psychiatry, represented as problematic, marginal and unclear. One psychiatrist, for example, writes that the new classification removes female sexual problems “from the realm of primarily psychiatric disorders … thereby bringing it into the mainstream of research and treatment.” 36 7.
The DSM and Sexual Problems
The Basson report queries the location of sexual problems in a psychiatric manual; it claims that the DSM-IV was developed “to provide nomenclature for mental conditions” and is “limited to consideration of psychiatric disorders”; a “diagnostic system that is applicable in medical and mental health settings is needed.” 37 Likewise, Sandra Leiblum writes that the definitions of sexual dysfunction in DSM-IV tend to be more useful to mental health practitioners than medical practitioners, since disorders [in the DSM] are viewed as psychosomatic in etiology – those due exclusively to a medical condition are relegated to a separate diagnostic entity, namely ‘sexual dysfunction due to a general medical condition.’ 38 These claims about the DSM are, however, belied by the revision of the DSM for its third edition in 1980. Its architects, and especially the very influential Robert Spitzer, aimed to distance psychiatry from psychodynamism; to redress psychiatry’s increasingly dubious status in the eyes of the medical profession and the wider culture; to reposition the discipline as biological psychiatry; and to rehabilitate a Kraepelinian model of psychiatry. 39 Spitzer saw the manual as representing an advance “toward the fulfilment of the scientific aspirations of the professions,” indicating an emergent professional consensus over procedures that “would eliminate the disarray that has characterized psychiatric diagnoses.” 40 The prime movers in these efforts quite explicitly committed themselves to the view that there is a clear boundary between the normal and the sick; that there are discrete mental illnesses; and that the focus “of psychiatric physicians should be particularly on the biological aspects of mental illness.” 41 What is more, representatives of a psychodynamic perspective were marginalised and alienated in the consensus processes. 42
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The DSM-III, in its aim to produce a “medical nomenclature” that would be common to all clinicians and researchers regardless of theoretical orientation, committed itself to etiological neutrality, invoking its methodological innovations, such as the multiaxial system, as proof of its all-embracing biopsychosocial perspective. 43 But this etiological neutrality dealt a blow to one of the central tenets of American psychiatry before 1980 – that the discipline was to identify and treat causes, not merely symptoms. And it is thoroughly amenable not only to the media (typically wary of complex, multifactorial disease narratives) but also to institutions with vested interests in marginalising the psychological, social, and contextual factors in disease. Pharmaceutical companies found no resistance in the DSM-III, and will have found even less in the Basson report, which states, for instance, that it may be useful “to develop a classification system for female sexual dysfunction that would parallel the clinical and basic science developments for men,” which have emphasised “organic causes and physical determinants for erectile dysfunction.” 44 The Basson report’s casting of the DSM as psychodynamic must therefore be seen as serving a particular rhetorical function. That the report stakes a proprietary claim to female sexual dysfunction, but on condition of its representation as a strictly medical disorder, undermines the efforts of DSM-III to represent psychiatry as unproblematically part of scientific medicine. This assertion of a physiological and pharmacological framework for sexual problems is not only an index of disciplinary expansionism (and by this I do not mean the expansion of a particular discipline such as urology, for instance, but rather of a range of disciplines all seeking shelter under the banner of a respectable, scientific biomedicine); it connotes an ongoing confusion about the relationship between the medical, the psychiatric, the psychological and the social, as well as illustrating the different connotations of these terms in different mouths. As Goldstein says, “I love psychologists, but they don’t deal with evidence.” 45
8.
Conclusion
Various tools are relevant in thinking about the ontological preferences and anxieties in representations of sexual problems – for instance, the role of the media in shaping discourse about medical causes; the impact of professional and disciplinary organisation on theoretical thinking in medicine; and the ramifications of academic-industrial collaboration. Important work on the impact of increasing privatisation and commercialisation of biomedical research, and the moral economies of academic scientists and pharmaceutical companies, is also crucial. 46 And yet I want to suggest that in the case of female sexual dysfunction at the very least, there is a need for a focus on the production of causal
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frameworks by medical discourse, and on a culture’s theoretical thinking about medicine. The disciplinary and productive power of medical discourse not only produces bodies, individuals and desires but also produces objects, such as appropriately scientific causes, available for theorising and experience by participants in a medical culture. We need, therefore, to scrutinise the voicing of epistemological and ontological commitments in medicine, a voicing which, reflecting wider cultural assumptions about medical objects, serves to produce and reinforce individual and cultural scripts about them. An arena where such an analysis would be fruitful is that relating to the workings of associations between ideals of specific causes, specific conditions and specific drugs. FSD is cast, by its new advocates, as a unitary, monolithic disorder with, hopefully, a common pathophysiology upon which a specific drug can act. This tendency is arguably related to the greater ease in marketing a drug for a condition understood as unitary, rather than one seen as fragmented into complex parts. Subtypes of a condition may involve different causal processes which do not necessarily all respond to the same drug. There may, then, be considerable motivations for blurring all (physical) causal factors into one unitary pathophysiological process. Drugs not working on a universal causal process might not work on every instance of FSD, and may even work on non-cases of FSD. Their medical cachet would then be undermined, since specificity of action has become the hallmark of a medical drug. Interestingly, in the FSD debate and elsewhere, a treatment acting on a particular cause tends to be seen as revealing the cause of the condition in question, an inference that betrays the preference for single causes. It also serves to distance the unpalatable prospect of “lifestyle drugs.” Just as Ritalin’s success in enhancing focus and concentration in individuals not diagnosed with ADHD, and its desirability on the black market, provoked consternation, so the use of Viagra by men without sexual problems, as an enhancer of normal function, and as another pill to pop in nightclubs, has raised troubling questions. The fear is that these drugs slide towards being non-medical promises of well-being sold in kooky health shops, and indeed become akin to recreational and illegal drugs. Moreover, while Ritalin threatens to become the legal cocaine of overworked adults and underachieving kids, Viagra presents an exacerbating problem in threatening to reveal itself as a sex toy, a sex aid, or an aphrodisiac. The marketing of drugs for sexual problems sits within a tradition of representing sexual technologies, at risk of a dubious status, as medical technologies unlikely to threaten traditional moral and behavioural norms. 47 The threat that sexual technologies pose to the ideal of a medical magic bullet also emanates from the discourse of self-
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fulfilment that tends to recur in the domain of sexuality; 48 and the popular rhetoric about sex as the expression of the inner core of ourselves, whose repression can lead to physical, mental and social disorder, has a long history. 49 These discourses of self-fulfilment in relation to sex threaten to cast drugs as enhancement technologies, through which individual pleasures triumph over the social and familial containment of sexuality. These are merely preliminary observations regarding the cultural contexts in which ontological assumptions about medicine operate. I hope, however, to have given a sense of the potential rewards to be had in scrutinising the etiological assumptions circulated between various stakeholders in medical culture. The individual and cultural scripts about appropriate ontologies in medicine reinforce and shape one another even through the cacophony of controversy, and are both expressed and moulded by the pharmaceutical pursuit of magic bullets – revealing and contextualising, in the case of FSD, a tendency to represent physiological ills and pharmacological solutions as natural bed-fellows, and to emphasise the virtue of little blue pills over that of green fingers in the realm of sexual problems.
Notes 1
Ray Moynihan, “The Making of a Disease: Female Sexual Dysfunction,” British Medical Journal 326 (2003): 45-47. 2 I use the term “FSD” for convenience, not to indicate a position on the question of the category’s validity. 3 Before the introduction of Viagra, penile implants, vacuum pumps, and urethral suppositories were used to treat ED; these are still used if Viagra is unsuccessful. Three other Viagra-like drugs – which increase blood flow to the penis – are now on the market, with a fourth drug, apomorphine (a dopamine agonist) acting centrally. 4 http://www.viagra.com/consumer/aboutViagra/index.asp (accessed 12 October 2004). 5 On sexual scripts, see John Gagnon, Human Sexualities (Glenview, Ill.: Scott, Foresman, 1977). 6 Gavin Yamey, “End Restrictions on Prescribing Viagra, Urges Coalition,” British Medical Journal 322 (2001): 385; UK Department of Health Press Release, “Impotence Consultation – Dobson Announces Final Decision,” 7 May 1999. 7 See Lucy Bland and Laura L. Doan (eds.), Sexology Uncensored: the Documents of Sexual Science (Cambridge: Polity Press, 1998). For the relationship between the nineteenth century’s “avalanche of numbers” and its “invention of normalcy” see Ian Hacking, The Taming of Chance (Cambridge: Cambridge University Press, 1990).
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American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (4th ed.) (Washington, D.C.: American Psychiatric Association, 1994). 9 Pfizer in fact announced in February 2004 that it was abandoning trials on Viagra as a means to improve female sexual problems, turning instead to drugs affecting brain chemistry. See Gardiner Harris, “Pfizer Gives Up Testing Viagra on Women,” New York Times, 28 February 2004. 10 Rosemary Basson et al., “Report of the International Consensus Development Conference on Female Sexual Dysfunction: Definitions and Classifications,” Journal of Urology 163 (2000): 888-893, reprinted in Journal of Sex and Marital Therapy 27 (2001): 83-94. The page numbers henceforth refer to the latter publication. 11 Basson et al., 84-85. 12 Edward O. Laumann et al., “Sexual Dysfunction in the United States: Prevalence and Predictors,” Journal of the American Medical Association 281 (1999): 538-544. 13 Edward O. Laumann et al., The Social Organization of Sexuality: Sexual Practices in the United States (Chicago: Chicago University Press, 1994). 14 Amongst others, between educational attainment, stress and forced sexual contact on the one hand, and various kinds of sexual dysfunction on the other; Laumann et al., 1994, 540-544. 15 Laumann et al., 1999, 543. 16 See for example Jennifer Berman et al., “Female Sexual Dysfunction: Incidence, Pathophysiology, Evaluation, and Treatment Options,” Urology 54 (1999): 385-391; Jennifer Berman et al., “Effect of Sildenafil on Subjective and Physiological Parameters of the Female Sexual Response in Women with Sexual Arousal Disorder,” Journal of Sex and Marital Therapy 27 (2001): 411-420; R. Cooke, “There’s gold in them thar pills,” Observer, 27 October 2002. 17 Laumann et al., 1999, 541. 18 Basson et al., 83-90. 19 It became clear that Laumann et al. worked for Pfizer and other pharmaceutical companies – circumstances originally omitted in publication; though this is unremarkable in itself, it is possible that there were marketing incentives, post-Viagra, to republicise the original data, given the potential for invocation of its statistics. 20 For example J. Brody, “Personal Health,” New York Times, 12 August 1988, sec. B, p. 4, quoted in Leonore Tiefer, Sex Is Not a Natural Act and Other Essays (Boulder, Colorado: Westview Press, 1995), 162. 21 Some classic formulations of the orthodox critique include Thomas Szasz, The Myth of Mental Illness: Foundations of a Theory of Personal Conduct (London: Secker & Warburg, 1962); Ivan Illich, Medical Nemesis: The Expropriation of Health (London: Calder and Boyars, 1975); Peter Conrad and Joseph W. Schneider, Deviance and
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Medicalization: From Badness to Sickness (St Louis: Mosby, 1980). For the Foucauldian critique, see Michel Foucault, Madness and Civilization: A History of Insanity in the Age of Reason (New York: Pantheon, 1965); idem, The Birth of the Clinic: An Archaeology of Medical Perception (London: Tavistock, 1973); Alan Petersen and Robin Bunton (eds.), Foucault: Health and Medicine (London: Routledge, 1997); David Armstrong, Political Anatomy of the Body: Medical Knowledge in Britain in the Twentieth Century (Cambridge: Cambridge University Press, 1983). For the contemporary discussion, witness the profusion of media discourse regarding Chronic Fatigue Syndrome, Gulf War Syndrome, Attention Deficit/Hyperactivity Disorder, and the increasingly controversial SSRIs. See also the BMJ’s themed edition: “Too Much Medicine?” British Medical Journal 324 (13 April 2002): 859-526. 22 Irving Kenneth Zola, Socio-medical Inquiries: Recollections, Reflections, and Reconsiderations (Philadelphia: Temple University Press, 1983), 295. 23 I. Kawachi and Peter Conrad, “Medicalisation and the Pharmacological Treatment of Blood Pressure,” in Contested Ground: Public Purpose and Private Interests in the Regulation of Prescription Drugs, ed. Peter Davis (New York: Oxford University Press, 1996), 26-41. 24 Examples include social anxiety disorder, menopause, pre-menstrual dysphoric disorder, post-war and post-trauma syndromes, ADHD, obesity, osteoporosis, and high blood pressure. See Richard J. DeGrandpre, Ritalin Nation: Rapid-Fire Culture and the Transformation of Human Consciousness (New York: Norton, 1999); Margaret Lock, Encounters with Aging: Mythologies of Menopause in Japan and North America (Berkeley: University of California Press, 1993); Lynn Payer, Diseasemongers: How Doctors, Drug Companies, and Insurers are Making You Feel Sick (New York: Wiley, 1992). 25 See James M. Humber and Robert F. Almeder (eds.), What Is Disease? (Totowa, NJ: Humana Press, 1997), and Ron Amundson, “Against Normal Function,” Studies in the History and Philosophy of Biological and Biomedical Sciences 31 (2000): 33-53. 26 John Bancroft et al. “Conceptualizing Women’s Sexual Problems,” Journal of Sex and Marital Therapy 27 (2001): 95-103; John Bancroft, “The Medicalization of Female Sexual Dysfunction: the Need for Caution,” Archives of Sexual Behavior 31 (2002): 451-455. 27 See for instance CBC News, “Article suggests ‘female sexual dysfunction’ created to sell drugs,” 3 January 2003, (13 October 2004), http://www.cbc.ca/stories/2003/01/03/Consumers/qfemale_sex030103; BBC News Online, “Myth of female impotence ‘created,’” 3 January 2003, (13 October 2004), http://news.bbc.co.uk/1/hi/health/2621705.stm. 28 Edna M. Astbury-Ward, “Re: Enhancing Relationships is a Joke,” bmj.com 2003
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http://bmj/bmjjournals.com/cgi/eletters/326/7379/45#28401 (20 January 2004). 29 David M. Ferguson, “Trivialization of a Disease,” bmj.com 2003 http://bmj.bmjjournals.com/cgi/eletters/326/7379/45#28521 (20 January 2004). 30 Pauline Lewis, “Conspiracy of Silence Hinders Understanding,” bmj.com 2003 http://bmj.bmjjournals.com/cgi/eletters/326/7379/45#28412 (20 January 2004). 31 Richard Taylor Segraves, “Editor’s comments,” Journal of Sex and Marital Therapy 27 (2001): 81. 32 See Basson et al., 88; Sandra R. Leiblum, “Critical Overview of the New Consensus-based Definitions and Classification of Female Sexual Dysfunction,” Journal of Sex and Marital Therapy, 27 (2001): 159-168, 161; Bancroft et al., 2001, 99; Rosemary Basson, “Are the complexities of Women’s Sexual Function Reflected in the New Consensus Definitions of Dysfunction?” Journal of Sex and Marital Therapy 27 (2001): 105-112. 33 Basson et al., 83. 34 Bancroft, 2002. 35 See Allan Brandt, No Magic Bullet: A Social History of Venereal Disease in the United States since 1880 (New York: Oxford University Press, 1985); Jeffrey Weeks, Sex, Politics, and Society: the Regulation of Sexuality since 1800 (London: Longman, 1981); Rachel Maines, The Technology of Orgasm: ‘Hysteria’, the Vibrator, and Women’s Sexual Satisfaction (Baltimore: Johns Hopkins University Press, 1998). 36 Renate Rosenthal, “Female Sexuality Comes Out Of the Psychiatric Closet,” Journal of Sex and Marital Therapy 27 (2001): 203-204, 203. (Italics added.) 37 Basson et al., 84, 92. 38 Sandra.R. Leiblum, 2001, 161. 39 Stuart A. Kirk and Herb Kutchins, The Selling of DSM: The Rhetoric of Science in Psychiatry (New York: Walter de Gruyter, 1992). 40 Ronald Bayer and Robert L. Spitzer, “Neurosis, Psychodynamics, and DSM-III: a History of the Controversy,” Archives of General Psychiatry, 42 (1985): 187-195, 187. On the twentieth century history of psychiatry’s problematic status, see Katherine Angel, “Defining Psychiatry: Aubrey Lewis’s 1938 Report and the Rockefeller Foundation,” in European Psychiatry on the Eve of War: Aubrey Lewis, the Maudsley Hospital and the Rockefeller Foundation in the 1930s, ed. Katherine Angel, Edgar Jones, and Michael Neve (London: Wellcome Trust Centre for the History of Medicine at UCL, 2003) 39-56. 41 Gerald L. Klerman, “The Evolution of a Scientific Nosology,” in Schizophrenia: Science and Practice, ed. John C. Shershow (Cambridge, MA: Harvard University Press, 1978). 42 Kirk and Kutchins, 1992.
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43
APA, 1994, xviii. Italics added. Basson et al., 85. 45 Moynihan, 47. 46 See Jennifer R. Fishman, “Manufacturing Desire: The Commodification of Female Sexual Dysfunction,” Social Studies of Science 34 (2004): 187218, and David Healy, “Shaping the Intimate: Influences on the Experience of Everyday Nerves,” Social Studies of Science 34 (2004): 219-245. 47 See Jennifer R. Fishman and Laura Mamo, “What’s in a Disorder: a Cultural Analysis of Medical and Pharmaceutical Constructions of Male and Female Sexual Dysfunction,” in A New View of Women’s Sexual Problems, ed. Ellyn Kaschak and Leonore Tiefer (New York: Haworth Press), 179-195); Maines, 1998. 48 The website for a clitoral stimulator called Vielle states that “Everybody is entitled to a satisfying, healthy sex life.” What is more, the occurrence of sexual problems is not “natural or inevitable.” http://www.vielle.info/Home/Index.cfm (15 October 2004). 49 See Angus McLaren, Twentieth Century Sexuality: a History (Oxford: Blackwell, 1999); Weeks, 1981; and Deborah Lupton, Medicine as Culture: Illness, Disease and the Body in Western Societies (London: Sage, 1994); Michel Foucault, The History of Sexuality: An Introduction (London: Allen Lane, 1976). 44
Bibliography American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (4th ed.). Washington, D.C.: American Psychiatric Association, 1994. Amundson, Ron. “Against Normal Function.” Studies in the History and Philosophy of Biological and Biomedical Sciences 31 (2000): 33-53. Angel, Katherine. “Defining Psychiatry: Aubrey Lewis’s 1938 Report and the Rockefeller Foundation.” In European Psychiatry on the Eve of War: Aubrey Lewis, the Maudsley Hospital and the Rockefeller Foundation in the 1930s, edited by Katherine Angel, Edgar Jones, and Michael Neve, 3956. London: Wellcome Trust Centre for the History of Medicine at UCL, 2003. Armstrong, David. Political Anatomy of the Body: Medical Knowledge in Britain in the Twentieth Century. Cambridge: Cambridge University Press, 1983.
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Bancroft, John “The Medicalization of Female Sexual Dysfunction: the Need for Caution.” Archives of Sexual Behavior 31 (2002): 451-455. Bancroft, John, Cynthia A. Graham, and Carol McCord. “Conceptualizing Women’s Sexual Problems.” Journal of Sex and Marital Therapy 27 (2001): 95-103. Basson, Rosemary. “Are the Complexities of Women’s Sexual Function Reflected in the New Consensus Definitions of Dysfunction?” Journal of Sex and Marital Therapy 27 (2001): 105-112. Basson, Rosemary, Jennifer Berman, Arthur L. Burnett, Leonard Derogatis, David Ferguson, et al. “Report of the International Consensus Development Conference on Female Sexual Dysfunction: Definitions and Classifications.” Journal of Urology 163 (2000): 888-893; reprinted in Journal of Sex and Marital Therapy 27 (2001): 83-94. Bayer, Ronald and Robert L. Spitzer. “Neurosis, Psychodynamics, and DSM-III: a History of the Controversy.” Archives of General Psychiatry 42 (1985): 187-195. Berman, Jennifer, Laura Berman, and Irwin Goldstein. “Female Sexual Dysfunction: Incidence, Pathophysiology, Evaluation, and Treatment Options.” Urology 54 (1999): 385-391. Berman, Jennifer, Laura Berman, H. Lin, E. Flaherty, N. Lahey, Irwin Goldstein. “Effect of Sildenafil on Subjective and Physiological Parameters of the Female Sexual response in Women with Sexual Arousal Disorder.” Journal of Sex and Marital Therapy 27 (2001): 411-420. Bland, Lucy and Laura L. Doan. (eds.) Sexology Uncensored: the Documents of Sexual Science. Cambridge: Polity Press, 1998. Brandt, Allan. No Magic Bullet: A Social History of Venereal Disease in the United States since 1880. New York: Oxford University Press, 1985. British Medical Journal (themed edition). “Too Much Medicine?” British Medical Journal 324 (2002): 859-926. Conrad, Peter and Joseph W. Schneider. Deviance and Medicalization: From Badness to Sickness. St Louis: Mosby, 1980. DeGrandpre, Richard J. Ritalin Nation: Rapid-Fire Culture and the Transformation of Human Consciousness. New York: Norton, 1999.
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Fishman, Jennifer R. “Manufacturing Desire: The Commodification of Female Sexual Dysfunction.” Social Studies of Science 34 (2004): 187218. Fishman, Jennifer R. and Laura Mamo. “What’s in a Disorder: a Cultural Analysis of Medical and Pharmaceutical Constructions of Male and Female Sexual Dysfunction.” In A New View of Women’s Sexual Problems, edited by Ellyn Kaschak and Leonore Tiefer, 179-195. New York: Haworth Press, 2001. Foucault, Michel. Madness and Civilization: A History of Insanity in the Age of Reason. New York: Pantheon, 1965. Foucault, Michel. The Birth of the Clinic: An Archaeology of Medical Perception. London: Tavistock, 1973. Foucault, Michel. The History of Sexuality: An Introduction (Volume 1). London: Allen Lane, 1976. Gagnon, John. Human Sexualities Glenview, Ill.: Scott, Foresman, 1977. Hacking, Ian. The Taming of Chance. Cambridge: Cambridge University Press, 1990. Healy, David. “Shaping the Intimate: Influences on the Experience of Everyday Nerves.” Social Studies of Science 34 (2004): 219-245. Humber, James M. and Robert F. Almeder (eds.). What Is Disease? Totowa, NJ: Humana Press, 1997. Illich, Ivan. Medical Nemesis: The Expropriation of Health. London: Calder and Boyars, 1975. Kawachi, I. and Peter Conrad. “Medicalisation and the Pharmacological Treatment of Blood Pressure.” In Contested Ground: Public Purpose and Private Interests in the Regulation of Prescription Drugs, edited by Peter Davis, 26-41. New York: Oxford University Press, 1996. Kirk, Stuart A. and Herb Kutchins. The Selling of DSM: The Rhetoric of Science in Psychiatry. New York: Walter de Gruyter, 1992. Klerman, Gerald L. “The Evolution of a Scientific Nosology.” In Schizophrenia: Science and Practice, edited by J.C. Shershow, 99-121. Cambridge, MA: Harvard University Press, 1978.
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Laumann, Edward O., John H. Gagnon, Robert T. Michael, and Stuart Michaels. The Social Organization of Sexuality: Sexual Practices in the United States. Chicago: Chicago University Press, 1994. Laumann, Edward O., Anthony Paik and Raymond C. Rosen. “Sexual Dysfunction in the United States: Prevalence and Predictors.” Journal of the American Medical Association 281 (1999): 538-544. Leiblum, Sandra R. “Critical Overview of the New Consensus-based Definitions and Classification of Female Sexual Dysfunction.” Journal of Sex and Marital Therapy 27 (2001):159-168. Lock, Margaret. Encounters with Aging: Mythologies of Menopause in Japan and North America. Berkeley: University of California Press, 1993. Lupton, Deborah. Medicine as Culture: Illness, Disease and the Body in Western Societies. London: Sage, 1994. Maines, Rachel. The Technology of Orgasm: ‘Hysteria’, the Vibrator, and Women’s Sexual Satisfaction. Baltimore: Johns Hopkins University Press, 1998. McLaren, Angus. Twentieth Century Sexuality: A History. Oxford: Blackwell, 1999. Moynihan, Ray. “The Making of a Disease: Female Sexual Dysfunction.” British Medical Journal 326 (2003): 45-47. Payer, Lynn. Disease-mongers: How Doctors, Drug Companies, and Insurers are Making You Feel Sick. New York: Wiley, 1992. Petersen, Alan and Robin Bunton (eds.). Foucault: Health and Medicine. London: Routledge, 1997. Rosenthal, Renate. “Female Sexuality Comes Out Of the Psychiatric Closet.” Journal of Sex and Marital Therapy 27 (2001): 203-204. Segraves, Richard Taylor. “Editor’s comments.” Journal of Sex and Marital Therapy 27 (2001), 81. Szasz, Thomas. The Myth of Mental Illness: Foundations of a Theory of Personal Conduct. London: Secker & Warburg, 1962.
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Tiefer, Leonore. Sex Is Not a Natural Act and Other Essays. Boulder, Colorado: Westview Press, 1995. UK Government Department of Health Press Release. “Impotence Consultation – Dobson Announces Final Decision.” 7 May 1999. Weeks, Jeffrey. Sex, Politics, and Society: the Regulation of Sexuality since 1800. London: Longman, 1981. Zola, Irving Kenneth. Socio-medical Inquiries: Recollections, Reflections, and Reconsiderations. Philadelphia: Temple University Press, 1983.
Note on Contributor Katherine Angel is currently writing a PhD on the lingering preference for single cause models in contemporary medical discourse. Her two case studies are Female Sexual Dysfunction and debates about the effects of stress on the immune system. She has completed two research jobs, one at the Wellcome Trust Centre for the History of Medicine at University College London, which led to a Medical History supplement with Edgar Jones and Michael Neve entitled European Psychiatry on the Eve of War: Aubrey Lewis, the Maudsley Hospital and the Rockefeller Foundation in the 1930s, and one in the Department of History and Philosophy of Science at Cambridge on Disease, Trust and Risk: Philosophy in Healthcare Technology. Department of the History and Philosophy of Science, Cambridge University, United Kingdom.
The Communication of Diagnostic Information by Doctors to Patients in the Consultation Peter J. Schulz Abstract In recent years research on communication in the medical field has increasingly developed. In particular the interaction between patient and doctor, as it develops during a consultation, has become a very interesting field of analysis. The approach to diseases and to patients has changed throughout the years and recently the trend is to consider the patient as a partner, as someone who cooperates in his own well-being. The cooperation between patient and doctor can be made easier through a more effective communication, above all during the crucial moment of the medical consultation. Two main moments in this interaction are diagnosis and prognosis. This paper will analyze them more precisely as speech acts of a particular kind. Searle’s taxonomy of speech acts will be used to classify them and also to understand ways in which they are peculiar. With regard to diagnosis, it will be shown how the performance of this speech act triggers a causal chain that, through the suggestion of a specific treatment, brings about changes in reality which could involve institutions at different levels and degrees of commitment. Moreover, the paper will hint at various perlocutionary effects entailed by the prognosis, which may strongly influence the patients’ behaviours. Keywords: health communication; speech acts; diagnosis, prognosis; 1.
Introduction
In recent years there have been an increasing number of studies in interpersonal communication in the doctor-patient consultation.1 Descriptive and experimental research has tried to shed light on the communication process during medical consultations. One explanation for the increasing interest in this area is that doctor-patient interaction has to be considered as one of the most complex interpersonal interactions because it deals with individuals in non-equal positions, considers the tension between the lay person and professional expertise, concerns issues of vital significance and requires close cooperation. Moreover, the asymmetrical communication between doctors and patients has changed to a remarkable extent over the past thirty years due to the enhanced role that patients play in making decisions about their treatment. As several authors
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have argued, until recently a paternalistic model of the doctor-patient relationship was dominant.2 According to this model, doctors exercise expertise in determining the nature of a patient’s condition and its proper management; meanwhile patients assume the passive sick role, whereby they are obligated to seek competent medical help and cooperate with the therapeutic agent.3 Changes in the health care delivery systems have shifted more responsibility to patients and the paternalistic model has elevated patient responsibility to both seek treatment and consider alternatives. Nevertheless, doctor-patient consultation is still based upon a communication gap between the medical competence on one side, and patients’ inability to help him or herself on the other side. Previous research4 has argued forcefully that the relative absence of diagnostic information provided by doctors in different types of medical interaction stems from the maintenance of authority by the practitioner over the patient. On the other side, it is increasingly recognized by the profession itself, that the relative absence of diagnostic information provided by doctors to patients has an impact on patients’ compliance with treatment programs. This paper proposes that an assessment of the two main concepts underlying doctor-patient communication, diagnosis and prognosis, might shed light on the asymmetrical relationship between patients and doctors. In order to gain a proper understanding of how medical assessment is delivered to the patient, I will first consider the role that diagnosis and prognosis play within doctor-patient communication. A closer look at the logic of diagnosis shows that it should not to be misunderstood as a merely theoretical proposition. The diagnosis also entails some strong communicative as well as institutional aspects that we briefly are going to describe. How diagnosis is related to communicative aspects becomes even more evident when taking into consideration the proximate concept of prognosis or prognostic knowledge. Within the concept of prognostic knowledge we can consider and emphasize the special situation of the patient. Whereas the diagnostic goal for the practitioner is to match the patient’s disease to the corresponding system of diseases, the patient is mostly interested in what he or she can expect now and in the future. This is where the concept of prognosis comes in. Reconsidering prognosis for the analysis of doctor-patient communication will highlight why the concept of disease should not be reduced to its functional aspects and will emphasize the patient’s perception as well as the goal-oriented behaviour of medical doctors. 2.
The Pivotal Position of Diagnosis
The concept of diagnosis has not always had such an important role in medicine as Lord Horder had attributed to it: His dictum “that the most important thing in medicine is diagnosis, the second most important
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thing is diagnosis and the third most important thing is diagnosis”5 was probably misleading for the first practitioners in the Western world. The most important concept for Hippocrates’ medical science, at least for the so-called school of Kos, was the idea of prognosis. Indeed, the reputation of the practitioner depended on whether he was able to carry out an appropriate prognosis. Whether or not he should act, the prognosis was taken as the basis for such a decision. The diagnosis, on the other hand, followed such a decision. That the reputation of Hippocrates was based on his prognostic rather than his diagnostic skill stemmed from the very nature of medical treatment, whose aim is primarily not to correctly recognize the disease but to cure it. Hippocrates’ own method was developed by means of conjectures: As far as I am concerned, I will not make any general predictions, but write down characters (semeia), by means of which one can make conjectures concerning the patients: which of them will heal and which will die; which will heal within a short time or sooner or later will die. (Corpus Hippocraticum, Chap. 1) Now, according to the Oxford English Dictionary, diagnosis means “The process of determining the nature of a disease” and “the identification of a disease from a patient’s symptoms.” It might, however, also refer to a “formal statement of this inquiry.” As to the latter, diagnosis forms a pivotal position within the doctor-patient consultation insofar as it denotes the completion of the practitioner’s inquiry into the patient’s complaint. Usually the diagnosis, in the sense of a formal statement in consultations is combined with an utterance in which the practitioner addresses the management of the patient’s condition. As to the former meaning, diagnosis might also be characterized as a process or inquiry into the patient’s health condition (sometimes it is also referred to as “diagnostics” 6 ). In other words, in working up a patient, doctors are blending at least two activities: one is the gathering of information and the other is the attempt to see a pattern or a constellation in those data.7 It is the patternseeing that might more technically be called the diagnosis. The doctor wants to put the patient in a classification because the doctor’s knowledge of causes, treatments, and prognoses is organized that way. In trying to arrive at a classification – that is, a disease or illness label – the process of data gathering and diagnosis are in no set sequence. The heart of any diagnostic reasoning is the relationship between signs, symptoms, laboratory tests, and so on, and the disease of which they are manifestations. What can the presence of the one tell the doctor about the possible presence of the other? That is, given the one, what is the probability of the other’s being there? Given the presence of a disease, what is the probability of having a specific symptom? What the doctor
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usually wants to know in diagnosis is the probability of the patient’s having this or that disease, given the symptoms he or she is manifesting. This is just the converse of what we might find out from records or the literature, namely, given the disease, what is the incidence of the symptom. In the diagnostic context, the physician is given the symptom, and is trying to figure out the probability of this or that disease in his patient, given the symptom. Impressionistically, then, if there is a high prior probability (a high incidence of the disease in the population) and if most people with the disease have the symptom in question, then the probability of this particular patient’s having the disease seems quite high. What we have done so far is to give a simplified description of the diagnostic process and also of the logic of diagnosis. A medical diagnostic process is a form of categorization, where the doctor tries to find an answer to the question “To which disease-category does one attribute this patient with these complaints, symptoms, and signs, or is there no disease (as a category) present here, or does the symptom ambiguously refer to more diseases?”8 The following example might shed light on this meaning: A particular patient, Beatrice, consults her doctor complaining of a feeling of pain, burning, tingling; she has a red rash with fluid-filled blisters on her back, fever and headache. After performing a routine examination, the doctor comes to the conclusion that Beatrice has shingles. Beatrice’s complaints, symptoms, and signs can be transformed by the medical practitioner into a patient data set consisting of several statements where each statement is describing a complaint, a symptom, or a sign. At any instant of the diagnostic process the doctor holds a set of judgments on what might be wrong with the patient. This set of judgments underlies the diagnosis. Accordingly, the diagnosis might be symbolized by D = {s1, …, sn} where each si is a statement on the patient at a particular instant of time. Within this formal description of medical diagnosis, one might distinguish particular forms of diagnosis. For instance, as Sadegh-Zadeh9 suggests, one might further distinguish between categorical and conjectural diagnosis, where the former refers to a statement on the patient that the diagnostician considers as true and the latter to a statement about the patient which the diagnostician does not yet consider to be true, but only a ‘hypothesis.’ Syntactically spoken, the conjecture might be formulated as a disjunction (‘Beatrice has shingles or she has an allergy’), it may be a modal statement (‘maybe Beatrice has shingles’) or it might come up as a quantitative-probabilistic diagnosis (‘the probability that Beatrice has shingles is about 0.6’).10
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Diagnosis as a Case of Speech Act
A medical diagnosis, as it has been described so far, identifies the disease from which the patient suffers. In one sense, diagnosis marks the completion of the doctor’s inquiries into the patients’ complaint and forms the foundation to manage the condition. But in another sense, as a formal statement of this inquiry combined with an utterance, diagnosis forms a pivotal position within the general practice consultation. At first glance, the doctors’ utterance to Beatrice ‘You have shingles’ belongs, according to the taxonomy of Speech Act Theory,11 to the class of assertive sentences such as ‘the door is open.’ Such sentences are usually viewed as statements of fact. Doctors will consider their diagnosis as a statement which they believe to report facts. However, beside the fact that delivering the diagnostic information within a distinct utterance presupposes asserting facts, the act of delivering also generates facts. By the use of the utterance ‘You have shingles,’ the doctor tries to bring about some institutional state of affairs, some changes in the patient’s world. From that point of view, delivering diagnostic information amounts to a case of declarative sentences: The patient might follow the doctor’s suggestion how to manage his/her health condition. Furthermore, the doctor’s diagnosis brings about other material changes in the real world, e.g. health insurance will pay for what the treatment of this disease will cost. This applies also for cases where doctors do not deliver the diagnosis to their patients, as often happens.12 Obviously, the more the diagnosis refers to a serious illness, the more it provokes a profound change in the world of the patient. As Searle noted,13 speech acts themselves are to be considered as institutional facts because they respond to constitutive rules. If we consider the diagnosis as a speech act, it will be interesting to investigate the constitutive rules to which it responds. In other words, we could describe diagnosis from the point of view of its necessary conditions and consequences. The necessary conditions for a diagnosis are: a disease, the professional qualification of GPs, a place meant for medical examinations14 and the analysis of the symptoms or data in general. The main consequence of a diagnosis expressed during a medical consultation is usually the suggestion of a certain therapy which may include the assumption of medicines, a period of rest, a prophylaxis treatment (in the case of infectious diseases found on others), hospitalisation, or intensive therapies. This means that when GPs examine a patient in their surgery, what they say will have quite a different meaning from what is said, for example, at a dinner with colleagues or during evening talks with their spouse. It is precisely through the formulation of the therapeutic suggestion that the diagnosis triggers a causal chain which often brings about important effects at institutional level or in the patient’s lifestyle.
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Examples of effects at the institutional level include the case in which health insurance has to pay for a certain therapy, but also other effects such as facilitating time off work or arranging specific therapies, depending on how the disease is considered at an institutional level. The patient’s lifestyle could also undergo major changes depending on the treatment regimen. From what we have said, it could also follow that the diagnosis has the illocutionary force in the sense that it commits the doctor to the truth of what he is saying. A medical diagnosis put forward by a doctor such as ‘I diagnose you having shingles’ (i.e. ‘You have shingles’ or ‘Beatrice has shingles’) may be construed as an illocutionary act that brings about the complex, co-operative process of viewing and treating a human being as a patient with shingles. In this respect the verb ‘to diagnose’ turns out to be a performative verb like ‘to bet,’ ‘to promise,’ ‘to swear’ or ‘to invite.’ In accordance with the taxonomic criteria proposed by Searle15 five basic classes of speech acts can be distinguished: assertives, directives, commissives, expressives and declaratives. We can now examine the speech act of diagnosis through each of these five classes. a) Assertives: The illocutionary goal of assertive speech acts can be defined in terms of the speaker’s intention of getting the hearer to accept the propositional content of the utterance as the expression of a true state of affairs.16 For present purposes, it is important to emphasize that whatever the type of assertive act may be, the doctor’s intention is to express a qualifying judgment. After seeing the patient, the doctor asserts the diagnosis by saying ‘you have bronchitis.’ Even if a mistake is always possible, what is said by the physician reflects what he or she thinks is the truth. b) Directives: The illocutionary goal of directives speech act is to attempt to get the hearer to do something. Paradigmatic cases are ‘to request,’ ‘to question,’ ‘to order,’ and ‘to advise.’ An example would be ‘The symptoms reveal that you might have SARS.’ The entities of the illness together with the institutional role of the physician mean that the utterance is understood as an obligation to be quarantined. Other diagnoses – such as ‘You have shingles’ – have an illocutionary force less powerful and are most likely to be perceived from the audience as advice. c) Comissives: The illocutionary goal of commissive speech acts is the speaker’s undertaking of the obligation to perform the action described by the propositional content of the utterance. Commissives are centred upon an action to be performed by the speaker (not by the hearer); moreover, it is the hearer (not the speaker), who is primarily supposed to benefit from the result of the action (basic categories are promises and offers). Their manifestation in diagnosis is realized by the expression of the doctor’s ability that the proposed therapy will be the right one in order for the patient to be cured. For example, the utterance ‘You have
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pneumonia’ implies the intention, the commitment taken by the physician towards a therapy’s proposal. Insofar as the doctor takes an obligation towards the adequate cure of the patient, the diagnosis could be considered as a commissive. d) Expressives: The illocutionary goal of expressive speech acts can be defined as the expression of a psychological state of the speaker which is brought about by the state of affairs indicated by the propositional content (paradigmatic cases are ‘to thank,’ ‘to congratulate’ or ‘to condole’). It seems to be evident that a diagnosis does not count as an expressive. Certainly, in a given situation the doctor might express his or her personal regret or sentiment, as in the example: “I’m sorry to have to tell you that …”. This, however, is not to be considered as a part of the diagnosis itself. e) Declaratives: Through the use of utterances, the speaker tries to bring about some institutional state of affairs or some change in the world. Paradigmatic cases are ‘to declare,’ ‘to marry,’ and ‘to fire.’ Certainly, the simple diagnosis could not be counted as a declarative; however, declaratives might play an important role under specific circumstances. Let us imagine that there is an outbreak of an epidemic like SARS and the government declares a public emergency. Subsequent to this declarative, the diagnosis ‘You have SARS’ would imply a directive such as ‘You have to be quarantined.’ It turns out that among the different taxonomic classes proposed by Searle, diagnosis fits quite well into the class of assertives, and cannot be directly considered to be another class. However, what makes this more interesting is that a diagnosis entails several institutional implications and the diagnosis initiates different institutional actions. It is through a diagnosis (written on a paper) and its accompanying prescription that the pharmacist is going to provide the medicament to the patient. It is by means of the diagnosis that the health insurer is going to pay for the medication as well as for the medical assessment. Of course, further investigations should be done, analyzing the diagnosis and intertwined institutional aspects. It follows, however, from the previous remarks that speech act theory, with its focus on the rules and conditions through which a sentence is understood as a particular kind of action, seems a promising approach and arguably central to the analysis of forms of interaction that takes place between doctor and patient.
4.
The Concept of Prognosis
In a manner analogous to that of diagnosis, prognosis is also at the core of doctors’ behaviour. But while diagnosis of a patient refers to a present instant of time, the prognosis is considered to be a statement that refers to the likely outcome of a patient’s disease.17 This analogy,
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however, has its own limits. A statement about the future entails a greater degree of uncertainty than a statement about the present and any diagnosis refers to an actual state of health. Prognosis refers necessarily to something in process in time that might still be subject to change. With any form of decision to act, the prognosis will be diversified. So, while the diagnosis is not the only basis for any prognosis, it is certainly the most important. For example, the order of the conceptions could not be reversed: it would be practically and logically incorrect if the prognosis influenced the medical assessment. Due to these differences, doctors will usually prioritize the diagnosis. The paradigm of classical mechanics allows us to see how closely the prognosis is related to the diagnosis. One is able to predict the status of any self-contained system at any moment in the future, in any instance where one knows the status, the ‘diagnosis,’ of the system in some determined moment. But although it is true that nowadays one might reach a high degree of probability for the diagnosis by means of modern medical technology, the ideal of precision remains far away. This is particularly true for prognosis, which is an assertion of probability par excellence. It might be this low degree of certainty which explains why the modern practitioner prefers generally to make a diagnosis instead of, as Hippocrates did, a prognosis. Medical knowledge in both diagnosis and prognosis is based on observations of occurrences in single persons. Multiple observations of patients can assist in discovering common features of these occurrences and in inducing rules from them, i.e. as statistical knowledge. But the extrapolation of these rules or statistical data to single persons remains a matter of probability factors. For this reason, statistical knowledge cannot really be related to a single case with any certainty. Usually, in spite of the temporal logic of diagnosis and prognosis that we have noted, every diagnosis includes also some prognostic valency. This is because every syndrome that might be diagnosed has its own typical course, always under the condition of probability (including such factors as duration of the condition, severity of the condition, and so forth). From the patient’s point of view, the prognostic valency is to the forward even as the doctor makes a diagnosis; at the same time, though, the doctor may be compelled to give priority to the demands that stem from the particular situation of the patient to the doctor’s action. The fact that prognosis plays such an important role for the patient is only understandable, then, if we consider its vital significance for the patient’s situation: it is about one’s own future, or, more emphatically, one’s own identity is at stake. Consequently, communicating a well-founded prognosis to the patient does not simply mean to transfer information; it means, even more importantly, to change a situation. But prognosis is not opposed to diagnosis in all respects. Both have a very practical basis – they are both action-oriented. This applies not
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only to the specific functions of diagnosis and prognosis but also to physician behaviour, since it enables decision-making as well as warranting it. A closer look at both diagnosis and prognosis shows that these concepts should not be misunderstood as merely theoretical propositions. Neither aims to generate a theoretical knowledge but rather a practical knowledge. A wrong diagnosis cannot be simply revised, as one might do with a pure theoretical statement, because the error refers to an action that cannot be easily cancelled. In contrast to hypotheses that derive from the natural sciences and are considered as universal statements, diagnosis and prognosis are singular statements on a particular patient at a particular instant of time. A medical assessment that stems from a pure theoretical interest and does not consider at all any kind of preventive or therapeutic regime should not be considered as a diagnosis or a prognosis, but as a human-biological enquiry. Such an isolated, ‘objective’ inquiry would necessarily disregard the fact that the concept of disease includes necessarily an assessment on the patient’s side about his or her subjective state. If we take into account that the concept of disease does indeed include such an assessment through the patient, it becomes evident that the concept of disease entails several individual, social and cultural factors. Reconfigured in this way, the concept of disease is thus characterised by a specific lack of conceptual clarity: Disease in this framework becomes, so to say, an interpretandum with underlying premises that are only partly an object of a scientific inquiry. Yet, this concept of disease is very productive in practical terms: we must conclude that some of a disease’s underlying premises might be ascertained only considering the specific socio-cultural circumstances where the doctor is consulting his patients.18
5.
Using the Concept of Prognosis in Order to Making Sense of Disease
As has already been mentioned before, the different degree of certainty between diagnosis and prognosis helps to explain why doctors are more oriented towards the diagnosis than to the prognosis. However, this entails, to some degree, the risk of repressing the extent to which disease is a disturbance of the functionality of the human organism. Certainly, the medical assessment of a disease embraces empirically describable and fixable parameters such as blood pressure, cholesterol level, number of leukocytes, to mention only a few. But disease should not be understood to consist merely of simple empirical diagnostic findings. From the point of view of patients, the most important question concerns their own future and what kind of physical disturbances they may have to take into account. And it is due to some initial disturbance of their wellbeing that the patient is usually consulting a doctor in order to gain some respite. Therefore, besides its functional disturbance, the concept of a
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disease refers to a state of a missing well-being and, as such, to a subjective state of being. Now, within the concept of prognostic knowledge we have the opportunity to consider and emphasize the special situation of the patient. Whereas the diagnostic goal for the practitioner is to match the patient’s disease to the corresponding system of diseases, patients are mostly interested in what they can expect for themselves and their future health and this leads to the concept of prognosis. Diagnosis may provide to some extent a neutral medical knowledge but it does not necessarily also imply decision-making. Prognosis is never such a neutral proposition, at least as it concerns the patient. From the point of view of patients, the consequences of prognosis are at the core of his or her interests, as we have argued, while the doctor is interested in the classification in order to decide whether he or she is able to cure, to help or only to palliate the symptoms. In opposition to the practitioner, prognosis has such an important meaning for the patient since it is necessarily of ‘existential interest.’ To return to the starting point, it is one thing to establish the relation between a symptom and a disease category. It is another thing to communicate this relation to the patient in his particular situation. Doctors do not only speak in a professional register with their colleagues about some disease and its symptoms; they also, and especially, will speak with their patients. In the latter case the interest of prognosis is predominantly in allowing patients to understand and in communicating to them what they may hope for or what they should fear. Although diagnosis presently continues to play a most important role in the discourse of doctors, its meaning for patients depends upon whether it shows them something about the outcome of their disease. This is, of course, because the patient is not only subjected to the present time, but is also, in his or her own way, preparing for the future.19 And, of course, the prognosis of the practitioner forces the patient to rethink this future. Prognosis (particularly a serious one), thus, remains necessarily related to the preservation of human life. Furthermore, it is manifest in all phases of human life: it determines our daily patterns of action as well as our overall life plans. Even at the micro level it does not cease: one can only participate in a discussion or listen to a melody if, at the same time, one is able to take on an expectant attitude toward the future which is constantly modified by the fulfilment or disappointment of expectation, and also by unexpected surprises. These expectations not only characterize the conditions of human life, they are also what are modified by a serious medical prognosis. While prognosis may offer the practitioner a basis for making decisions, it necessarily focuses the patient to reflect upon, and perhaps also revise, his or her life. Consequently, wherever prognoses are given and prognostic bits of information are handed out, the practitioner will have to take into account the human, interpersonal consequences sketched briefly here.
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Above all, physicians will have to bear in mind that a prognosis must never be viewed in isolation, independent of the connection to the particular patient. For in the context of the practitioner’s office, the prognosis necessarily occupies a totally different meaning than it does in the context of the life of the patient.
6.
Conclusion
At the end of my considerations, I will only briefly mention some problems that might arise whenever (a) the understanding of diagnosis will be reduced to a scientific inquiry into patient’s health conditions and (b) when diagnosis and prognosis become separated from the doctor’s behaviour. In the previous part I argued that at the very core of doctorpatient interaction stands the patient’s judgment. It is the patient’s perception of his disease that makes him consult a doctor. The concept of prognosis therefore necessarily underlies patient perceptions of their own health status. This perception, however, is not only a sensory perception but is also reflected within a patient’s general attitude towards life. Within any patient’s life plan, the disease acquires a specific significance. However, this individual assessment is somehow limited because usually the patient does not have a specialized knowledge of medicine at his or her disposal that should become an integral part of assessing his own situation. In diagnosis, doctors help by ‘objectivizing’ patients’ self-assessment insofar as they relate the personal perception of the disease to pathological findings. In this respect, the perception of the disease is therefore transformed into an operational entity. The underlying model of the “patient-oriented medicine” assumes that the doctor has to put his scientifically ascertained knowledge at the patient’s disposal, and it is up to the patient to decide what kind of therapy he prefers. With this idea, however, the burden of responsibility is on the patient’s side; it presupposes that the patient is, in principle, cognizant of relevant details and, further, able to anticipate possible outcomes of his treatment. Besides the fact that this view might be rightly challenged, it also entails a further problem. Dissolving the medical behaviour from its own traditional finality, while leaving the power to decide about medical information up to the patient, would change the doctor-patient interaction to a kind of service similar to that between a customer and his client. To be sure, the doctor-patient relationship might become a less complex phenomenon in such a scenario. But it is not yet clear to whom this would be a benefit.
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Notes 1. Ong et al, “Doctor-Patient Communication. A Review of the Literature.” Social Science & Medicine 40 (1995): 903-918. 2. Talcott Parsons, “The Sick Role and the Role of the Physician Reconsidered.” Milbank Memorial Fund Quarterly 53 (1975): 257-278. 3. Ibid. 4. Patrick S. Byrne and Barrie E.L. Long, Doctors Talking to Patients: A Study of the Verbal Behaviours of Doctors in the Consultation (London: HMSO, 1976). 5. Thomas A. Sebeok, Signs. An Introduction to Semiotics (Toronto: University of Toronto Press, 1994), 60. 6. Arthus S. Elstein, Lee S. Shulman and Sarah A. Sprafka, Medical Problem Solving. An Analysis of Clinical Reasoning (Cambridge: Harvard University Press, 1978). 7. Cf. John D. Stoeckle and Arthur J. Barsky, “Attributions: Uses of Social Science Knowledge in the Doctoring of Primary Care,” in The Relevance of Social Science for Medicine, ed. by Leon Eisenberg & Arthur Kleinman (Dordrecht, Netherlands: D. Reidel, 1980), 223-240. 8. John Gale, and Paul Marsden, “Diagnosis: Process not Product,” in Decision-Making in General Practice, ed. Michael Sheldon, John Brooke, and Alan Rector (London: Macmillan Press, 1985), 59-105. 9. Kazem Sadegh-Zadeh, “Foundations of Clinical Praxiology. Part 2. Categorical and Conjectural Diagnoses.” Metamedicine 3 (1982):101-14. 10. Sadegh-Zadeh, 1982. On the use of modal verbs in the verbal formulation of the diagnosis, it could be interesting to study more thoroughly if their use strengthens or weakens the doctor’s authority in the eyes of the patient. It would also be worth exploring if they could be considered an expression of the awareness of the fact that medicine is not an exact science, and thus represent a way in which the GP leaves to himself a possibility of “making mistakes.” 11. John Searle, Speech acts. An Essay in the Philosophy of Language. (Cambridge: University Press, 1969), 66. 12. Byrne and Long, 1976; Christian Heath “The Delivery and Reception of Diagnosis in the General-Practice Consultation,” in Talk at Work. Interaction in Institutional Settings, ed. Paul Drew and John Heritage (Cambridge: Cambridge University Press, 1992), 235-267. 13. Searle, 1969:51-52. 14. There are exceptions to the place in which a diagnosis can be made; for example, when the GP visits a patient in his home or in emergency situations, such as a battle field or an accident. We will limit ourselves to the typical situation. 15. Searle, 1969. 16. Searle, 1969:66.
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17. One can clarify the specific nature of prognosis and its meaning for the medicine of antiquity by going into the characteristics of the underlying communicative context. As Sebeok has pointed out, referring to the ancient medical science of Hippocrates: “The craft of interpreting symptoms has a significance far exceeding the practitioner’s day-to-day management of sickness. As Hippocrates had already anticipated, its success derives from its psychological power, which critically depends on the practitioner’s ability to impress his/her skills on both the patient and their joint environment (the audience gathered in his/her workshop, which may consist of the patient’s family and friends, as well as the practitioner’s colleagues and staff)” (Sebeok, 1994: 85). 18. In this context, we might refer to how the decision of the American Medical Association to consider alcoholism as a serious disease led to the conclusion that the person affected would more suitably be treated by a doctor rather than, say, made to suffer incarceration. 19. In this sense, we could speak of perlocutionary effects of the prognosis on the patient. This point deserves further inquiries but, as perlocutionary effects, we could mention here the causing of hope, or sadness and anguish, in the patient; states of mind which will surely influence his/her following course of action.
Bibliography Byrne, Patrick S. and Long, Barrie E.L. Doctors Talking to Patients: A Study of the verbal behaviours of doctors in the consultation. London: HMSO, 1976. Elstein, Arthur S., Lee Shulman, and Sarah A. Sprafka, Medical Problem solving. An Analysis of Clinical Reasoning. Cambridge: Harvard University Press, 1978. Gale, John and Paul Marsden, “Diagnosis: Process not product”. In: Decision-Making in General Practice, edited by Michael Sheldon, John Brooke and Alan Rector, 59-105. London: Macmillan Press, 1985. Heath, Christian. “The Delivery and Reception of Diagnosis in the General-Practice Consultation”. In: Talk at Work. Interaction in institutional settings, edited by Paul Drew and John Heritage, 235-267. Cambridge: Cambridge University Press, 1992. Ong, Lucille M. L., Hanneke C. J. M. de Haes, Ann M. Hoos and Frits B. Lammes. “Doctor-Patient Communication. A Review of the Literature.” Social Science & Medicine 40 (1995): 903-918.
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Parsons, Talcott. “The Sick Role and the Role of the Physician Reconsidered.” Milbank Memorial Fund Quarterly 53 (1975): 257-278. Sadegh-Zadeh, Kazem. “Foundations of Clinical Praxiology. Part 2. Categorical and Conjectural Diagnoses.” Metamedicine 3 (1982):101-14. Searle, John R. Speech Acts. An Essay in the Philosophy of Language. Cambridge: University Press, 1969. Sebeok, Thomas A. Signs. An Introduction to Semiotics. Toronto: University Press, 1994. Siminoff, Laura and Mary M. Step, “A Communication Model of Shared Decision Making: Accounting for Cancer Treatment Decisions.” Health Psychology, 24, 4 Suppl. (2004): S99-S105. Stoeckle, John D. and Arthur Barsky. “Attributions: Uses of Social Science Knowledge in the Doctoring of Primary Care.” In The Relevance of Social Science for Medicine, edited by Leon Eisenberg & Arthur Kleinman, 223-240. Dordrecht, Netherlands: D. Reidel, 1980. Tuckett, David, Mary Boulton, Coral Olson, and Anthony Williams. Meetings between Experts: An Approach to Sharing Ideas in Medical Consultations. London: Tavistock, 1985. Wieland, Wolfgang. Diagnose. Überlegungen zur Medizintheorie. Berlin: Walter de Gruyter, 1975.
Note on Contributor Peter J. Schulz (
[email protected]) is Professor for Semiotics at the School of Communication Sciences and director of the Health Care Communication Laboratory (www.hcc-lab.org), University of Lugano. He currently holds several project grants from the Swiss National Science Foundation in the area of health communication.
Part 3
Biomedicine in a Socio-Cultural Context
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Subaltern Theories of Health and Illness: An Ethnographic Study of Mexican Women Living with HIV Disease Betania Allen Abstract In this chapter I explore the subaltern theories of health and illness constructed by Mexican women living with human immunodeficiency virus (HIV). I carried out an ethnographic study using observation, group and individual interviews, with 30 HIV positive women receiving treatment at a public hospital in Mexico City during 2002-2004. How the women included in this study classify HIV and explain how health and illness work (the aetiology and nosology they construct) influences how they experience and participate in medical treatment, including their adherence to antiretroviral medicine. I describe three subaltern theories of health and illness: biomedical (subaltern use of hegemonic biomedical thought), holistic (in which psychological and physical health are conceived as inseparable) and naturopathic (plantbased foods and treatments are privileged while medicines are seen as toxic). Women who construct a subaltern biomedical aetiology of HIV tend to become very involved in management of their medical care and are usually quite adherent to treatment. Those women who explain HIV in a more holistic manner privilege their psychological health over the use of medicines. Finally, women who develop a naturopathic theory of HIV and its treatment are often not adherent to treatment, because they conceive medicines as toxins from which the body must be cleansed periodically. Key words: HIV, subaltern theories of health and illness, ethnography, antiretroviral treatment, adherence. 1.
Introduction
In this chapter I explore certain aspects of the symbolic and social experience of living with HIV disease. I examine the subaltern theories of health and illness constructed by women living with HIV These are subaltern ethnotheories of the aetiology and nosology of HIV, and they constitute logical systems for thinking about and explaining health and illness processes.1 The specific experience I deal with here is that of seropositive2 women living with HIV for a number of years (in general over 8 years) and receiving medical treatment in Mexico, a middle-income country.
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I will begin by providing some information about the treatment of HIV and the epidemic in Mexico. In the mid 1990s, new medicines for treating HIV/AIDS, called antiretroviral therapy, came into use which greatly extend seropositive people’s life expectancy.3 These are a series of drugs which when taken in certain combinations help to prevent HIV from debilitating the person’s immune system. An HIV-positive person who takes these medicines can live with non symptomatic HIV disease for an as yet undetermined length of time, but which is measured in years and quite possibly decades. However, the medicines are quite expensive, must be taken consistently for long periods and rather intensive and expert medical supervision is needed, including regular laboratory tests.4 Thus, HIV has become a disease which can be lived with long-term, and considered chronic, only for those seropositive people with access to antiretroviral medicines and the health care infrastructure, including specialized medical personnel, necessary to follow an antiretroviral regime correctly. 5 An important element of the experience of receiving treatment for HIV disease with antiretroviral therapy is the need to adhere to the treatment regime. Although a clear clinical definition of patient adherence is lacking, adherence to treatment can be understood as taking the prescribed doses of medicines at the times and in the conditions recommended. For antiretroviral treatment of HIV disease, this means remembering to take one’s (sometimes numerous) pills every day, at the correct time of day, with or without food (or certain types of foods), for an extremely long period.6 Another aspect of antiretroviral medicine use are the possible side effects, ranging from nausea and vomiting to lipodistrophy, which is the wasting (fat and muscle loss) of the face and limbs combined with either wasting or accumulation of fat around the trunk.7 The complexity of the treatment regime combined with the side effects make long-term adherence quite difficult. In the Americas, Mexico has the third largest number of people living with HIV/AIDS, after the United States and Brazil. As of 1998, according to official estimates, 150,000 people were living with HIV/AIDS in Mexico, and government agencies indicate that approximately 15% of Mexicans infected with the virus are women. Mexico has what is called a concentrated epidemic, which means that HIV prevalence in the general population is under 1% but there are high levels of prevalence in specific populations, such as men who have sex with men and intravenous drug users.8 In Mexico, the social security health care system provides medical attention for those who work in the formal sector and cannot afford private insurance. Since this type of health care provides all care,
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including prescribed medications, without additional fees9, people living with HIV/AIDS who have access to this type of medical attention receive antiretroviral medicines at no extra charge. As of 2000, government estimates indicate that 30.7% of people diagnosed with HIV/AIDS in Mexico received care at the largest of the social security health care systems (this study was carried out in a hospital from this system).10 2.
Methods
In this ethnographic study, participants were women living in or near Mexico City who received most of their health care within the social security system. The thirty participants are 22-45 years old. Most have a low or middle-low socio-economic status, but none are impoverished. Although virtually all identify themselves as housewives, most also do paid work. The participants have lived with HIV for between three months and seventeen years; more than half have lived with the virus for over eight years. Most are taking antiretroviral medicines, although a very few do not. Almost all became infected with HIV in the context of their heterosexual marriages, and most had only one lifetime sexual partner before acquiring HIV. A few may have become infected through blood transfusions, probably before blood began to be screened for HIV in Mexico.11 When I began to work with them, I explained to the women that I was doing a research project and obtained signed informed consent from all participants. I did participant observation within support groups for women living with HIV/AIDS, which were held at a hospital and at a nongovernmental organization. Gradually, I also began to accompany the women I met in the support groups during their other activities at the hospital, such as standing in line at the pharmacy, sitting in the waiting rooms, walking from one part of the hospital to another while getting signatures for paperwork, etc., but not during their consultations with doctors. I also participated in the non-governmental organization’s activities. When the women invited me to social events, at the nongovernmental organization or in their homes, I also attended these. After each fieldwork session I wrote field notes registering activities observed, comments made, and my own reflections. Within the support groups, I audio-taped structured and informal group interviews. After participating in the support groups for a year, I began to conduct individual interviews that lasted 3-4 hours each. I used long-term observation (for almost two years, from July 2002 to April 2004) to create a context for the group and individual interviews. My aim
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was to produce a thick description that would allow me to achieve a deeper understanding of the cultural reality I was studying.12 The interpretation was developed through repeated review and coding of the field notes and transcriptions of group and individual interviews.13 3.
Interpretation
A. Subaltern Theories of Health and Illness Subaltern theories of health and illness are discursive universes, which include a nosology and an aetiology, through which people classify and name diseases, and explain how one becomes sick or is cured.14 A subaltern (e.g., non hegemonic) nosology is a thought system that classifies diseases; for example, whether HIV is categorized as chronic or terminal and which other diseases it is grouped with or seen as similar to.15 A subaltern aetiology constitutes an explanation of the symptoms, causes and cures related to a specific disease; in this case, what makes an HIV positive person stay healthy or become ill.16 How the women included in this ethnographic study understand and define being healthy or sick, and how they experience and participate in medical treatment, including their adherence to antiretroviral medicines, is intertwined with the subaltern theories of health and illness they construct. In my view, all nosologies and aetiologies are symbolic systems in that they involve representation of the body and of how health and sickness, becoming sick, healing and staying well, take place (this includes modern, Western biomedicine).17 Here I describe three theories of health and illness constructed by the study participants; each individual usually combines different logical systems for thinking about health and sickness, picking and choosing certain elements from each, but one of these tends to be predominant in the way they understand, explain and act on their experience of HIV disease.18 Some of the women studied construct a subaltern aetiology that takes many elements from biomedical, scientific discourse; this is a subaltern use of a hegemonic symbolic system. This ethnotheory of health and illness privileges the use of antiretroviral medicines and laboratory tests for surveillance of the behaviour of the virus within the body and also of the immune system. Within this conception, medical doctors and laboratory test results are the highest authority in terms of treatment decisions.19 Secondly, the holistic aetiology implies a notion of the person and the body as integrated to the point of being one and the same, and of physical and emotional health as completely intertwined as well. Therefore, indicators of emotional or psychological health (which the
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patient herself monitors) are considered more important than physical aspects of the disease, such as symptoms or laboratory tests, and unburdening oneself emotionally (through talk therapy especially) is more important than taking antiretroviral medicines.20 Naturopathy constitutes a third subaltern theory of health and illness, which classifies cultural units (especially “treatments” or “causes of disease”) as natural and therefore good, cleansing, fortifying or supportive of health, or the opposite which is bad, toxic, chemical and which weaken health and cause or contribute to disease. This system of thought conceives plant-based foods and medicines (juices, vegetables, seeds, herbs, chlorophyll, etc.) as most efficacious for maintaining health. In contrast, within this system of logic, medicines may combat sickness, but they do not promote health because they are considered toxic, especially if used for long periods of time, after which the body must be cleansed, often through the suspension of medication and the use of plantbased treatments.21 B. Meanings of Being Healthy or Sick in Relation to Different Subaltern Theories of Health and Illness Three women who construct a subaltern biomedical theory of health and illness related to living with HIV are Olivia, Chloe and Laura.22 Olivia is married to a man who is also living with and receiving treatment for HIV, and has two children (one an adolescent, the other a young adult) who are not infected. She and her husband have decided not to explore how they acquired the virus, but she married him at a very young age (she didn’t attend high school for this reason) and has had no other sexual partners. She received a positive HIV diagnosis twelve years ago, and a few years later she became an activist in the fight for equal access to medicines for all people living with HIV in Mexico. Chloe married at eighteen (her husband was her first sexual partner), became pregnant at nineteen and gave birth to a son. In a few months, her son was diagnosed as HIV positive, as was she and her husband, who died shortly afterwards. Her son lived to be ten years old. Chloe has lived with HIV for eighteen years, and is currently remarried, to a man who is not HIV infected and knows of her serostatus,23 and has retired from her job as a childcare worker in order to care for her health. She likes to do aerobics, although she says that the other women in her classes must think she is anorexic, because she is quite thin (a side-effect of the antiretroviral medicines she takes); she laughs at this and then says that she continues to exercise because it keeps her healthy.
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Laura and her sixteen-year-old daughter are both HIV positive, so Laura knows she has had HIV for at least seventeen years, perhaps longer. Her husband was her first sexual partner and he died of AIDS ten years ago. Laura lives with her daughter and sister, and she is employed as a domestic employee in a private home. Laura completed her high school education as an adult, and after her workday cleaning house, cooking and caring for her elderly employer, she volunteers her time teaching adult literacy in the evenings, before travelling over an hour to her home to prepare dinner and help her daughter with her homework. These three women say that a person who lives with HIV can be healthy if she takes care of her health by taking medicines as prescribed, eating the diet recommended by the doctor or nutritionist, getting preventive vaccines (for the flu, etc.), treating opportunistic infections promptly and regularly undergoing certain laboratory tests for managing HIV disease. Thus, Laura says that her daughter is not healthy because she does not take her antiretroviral medicines as the doctor prescribes. However, she conceives of herself as healthy because she adheres to her treatment regime. Chloe describes herself as healthy because, although she has a disease, she takes care of herself by eating right, exercising and by always, always taking her pills, no matter what. Olivia says she is very healthy, perhaps more so than before she was infected with HIV, because at that time she did not take care of herself, watch her diet or get regular checkups. These women’s self-representations also vary over time. Chloe, for example, considered herself a healthy person at the beginning of my field work, and then went through a difficult phase with repeated problems with her antiretroviral treatment, including diverse symptoms. During this period, she temporarily accepted and acted out her role as a sick person, reducing her activities, eating a special diet, going to many appointments with various specialists and checking herself into the hospital three times. After a few months she went back to seeing herself as healthy, and acting as such. The extension of these women’s life expectancies, obtained through antiretroviral treatment, seems to make it more operable for them to separate themselves from the sickness role, except during periods of time with fixed limits. Patricia and Linda are two women living with HIV disease who construct a holistic aetiology of HIV disease. Patricia received her HIV positive diagnosis twelve years ago, shortly after her husband did (he was her first sexual partner, and the only one as of her diagnosis); he died a short time after the diagnosis. She lives with an adolescent son, and another son who is a young adult, his wife and her grandchild by this son. She also has another son, and neither he nor the other two are infected
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with HIV. Patricia sells makeup through a catalogue, and has won prizes for best salesperson more than once. Linda sought an HIV test eight years ago, because both she and her husband had experienced repeated respiratory infections; he sought a test somewhat later, decided not to tell his doctor his diagnosis, and died that same year. He was her second sexual partner in her lifetime; her daughter by that marriage is not HIV infected. Linda currently shares a house with her daughter and her elderly mother; a brother owns the house and lives next door, and Linda recently revealed to her family that this brother raped her when she was a child (the brother accepted that this was true). Linda’s mother has high blood pressure and a coronary condition, and Linda herself has lupus (as do all her sisters), in addition to HIV disease. Patricia identifies herself as a person who is healthy, but who is living with a disease. For Patricia, sickness lasts for a defined period of time, and is linked to being sick or healthy, but not to the person or self. She does not act out the sickness role, and in this way separates herself, the person she is, from the disease. So, Patricia conceives of herself as a healthy person who is sick at times, perhaps even frequently, but does not see herself as a sick person. Patricia says that the most important thing for staying healthy, especially as a person living with HIV, is to have a positive outlook on life and not let oneself get depressed. If she senses a depression coming on she “stays healthy by curing my depression” by doing light exercise such as walking, calling a friend on the phone to talk or making sure to attend support group sessions. Also essential for maintaining health, according to Patricia’s way of thinking, is to resolve emotional conflicts by discussing problems, expressing one’s feelings and if necessary cutting off all contact with someone, even a family member, if that person mistreats one emotionally. Since emotional health is the most important element of Patricia’s holistic thinking about health and illness, she does not always take all her antiretroviral medicines.24 Linda, in contrast, says repeatedly that she is a very sick person and has a self-image in which one of the principal characteristics is having HIV. Most important in this self-description as a sick person are the psychological problems that Linda experiences. Linda defines herself as unhealthy not principally because she has HIV and lupus; instead, she explains that she has these two diseases because she is unhealthy. Linda’s definition of being unhealthy is based on her experience of sexual abuse as a child, of emotional abuse by her mother, of neglect by her husband, and her frequent depressions. However, Linda does not by any means take a passive stance in her use of medical care. For example, when she received her HIV diagnosis, antiretroviral treatments were not being prescribed in
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Mexico, but she managed to participate in a clinical trial of these medicines, even though the study had already recruited sufficient participants (they were no longer accepting candidates, but she convinced them to include her). After receiving her lupus diagnosis, she found a doctor who was studying this disease and he helped her get access to specialized care at the hospital he is employed at. Linda uses her active acceptance of the sickness role in order to manage her use of (and demand quality within) a large variety of health services. This strategy seems to work for her, as she receives medical care within three different institutions, and psychological care at one of these three and at a fourth organization as well. Jackie is a woman who has a great deal of knowledge about naturopathy and has constructed a subaltern theory of HIV disease that is primarily naturopathic, although it also includes some aspects of biomedicine. Jackie and her husband always used condoms during their marriage, until she decided to get pregnant. She consulted her gynaecologist before she stopped using condoms, and then received prenatal care during her entire pregnancy; unfortunately, her doctor did not recommend that she and her husband have HIV tests. As an infant, her daughter began to have frequent and severe health problems, including seizures and comas, and was soon diagnosed with HIV. Jackie also tested positive, as did her husband, from whom she separated. Jackie now lives with her sister, whom she works with as an accountant, and her daughter, who has continued to have health problems. This has meant that Jackie visits the hospitals where her daughter receives care daily at times, or at least weekly when her health is better. Jackie also visits her daughter’s school every day at lunch time (she is eight), to make sure she takes her antiretroviral medicines correctly. Jackie likes to read, including self-help books, novels and biographies that have been quoted in the news, and about the medicinal uses of herbs and juices. Jackie has constructed a complex theory of health and illness that includes naturopathic notions of plant-based products as good and cleansing while she thinks medicines are harsh and toxic. AT the same time, she values biomedicine, and specifically antiretroviral medicines and the laboratory tests which are used as indicators of whether these medicines are working. However, since naturopathy is dominant in her discursive universe of how health and sickness occur, or how one can become sick or stay healthy, she conceives of herself as a healthy person because she tries to eat lots of vegetables, eats flaxseed daily, drinks medicinal juices frequently (for example, beet-alfalfa-onion-garlic juice) and takes chlorophyll when she can afford it (if she cannot, then she buys it for her daughter while she herself goes without). Jackie says that in
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general she has not taken her medicines as prescribed, for a number of reasons, ranging from not having time or not remembering, to problems with side effects such as nausea and vomiting, and especially because she feels her body regularly needs a rest or a break from these “toxic” medicines. Jackie explains that chlorophyll is important because it protects the body from the “strength” and “harshness” of the antiretroviral medicines, and that flaxseed has similar properties. Based on the naturopathic theory of health, Jackie also says that drinking juices, freshly squeezed and in specific combinations, is important to cleanse the body of the toxins that these medicines contain. C. The Intertwining of Theories of Health and Illness with Styles of Managing Medical Care for HIV and Adherence to Treatment Also linked to the theory of health and illness each woman constructs are the different management styles related to use of medical care for HIV disease. Women like Olivia, Chloe and Laura, who privilege a biomedical aetiology, exercise a high degree of control over their medical care, with intensive use of laboratory tests and clinical exams by their physician as well as putting great effort into strictly adhering to their prescribed antiretroviral treatments. Olivia, in spite of having a junior high school education and not knowing how to use a computer or the internet, has amassed a great deal of up-to-date, scientific knowledge about medical management of HIV disease. Both Olivia and Chloe often obtain second opinions and in general they themselves manage their own treatment. For example, Olivia tells her treating physician what medicines she wishes to take, based on information she gleans from conferences on HIV treatment which she attends, pamphlets and booklets she reads, by speaking with other HIV positive people and information she receives from pharmaceutical company employees she interacts with as an activist. At a time when scheduled vacations from antiretroviral treatment were just beginning to be used in Europe and the United States, and were still quite rare in Mexico, Olivia told her treating physician she would like to take a treatment vacation (suspension of use of all antiretroviral medicines for a period of time). He disagreed with this treatment option, so she obtained second and third opinions, one from a private physician and one from an expert in HIV treatment who also held a high-level position in her treating physician’s hospital. Even with these expert opinions, her treating physician would not recommend a treatment vacation; when Olivia told him she was taking one anyway, he said it was, in Olivia’s words, “at her own risk.” She took the treatment vacation, after which she resumed
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taking antiretroviral medications, with her usual, extremely strict adherence. It is interesting to note that Olivia did not hide from her physician the fact that she was going to take a treatment vacation; instead she said she wanted him to know what she was doing, so he could take this into account in future. This control over their medical care gives Olivia and Chloe a feeling of empowerment; and not only a feeling, as it implies real power to decide about their health and illness, their bodies and lives. The feeling of security these two women get from this style of managing their health care seems to stem from having control over their medical attention. Such control implies choosing to take a medicine or to have a procedure done, not “having it done to them.” It also indicates they control the disease, instead of feeling that it controls them. Perhaps related to this is their reluctance to check into the hospital; they will check themselves in if necessary but say they very much prefer not to, as then “nurses and doctors decide what I can do”. For Chloe, antiretroviral medicines, when taken correctly and constantly, provide a feeling of control and security. So, for example, Chloe’s doctor recommended she stop taking her antiretroviral medicine for a short period of time until they could find a substitute treatment which would not cause certain side effects which her doctor felt were dangerous. She felt so unprotected that she continued taking the medicine, in the face of fairly clear indications by the doctor that she should not. This caused an allergic reaction (anaphylactic shock) that almost killed her. After this event, although Chloe and her seropositive friends agreed that it was better to follow the doctor’s directions, they also said they felt it was understandable that she did not want to be without medication, as this made her feel “extremely unprotected” and “not in control.” One way of exercising control is through constant monitoring of immune system status and HIV progression through frequent laboratory tests. Laura exercises control over the disease and its treatment in this way; she requests frequent tests of the level of HIV in her blood (if the virus is undetectable, this indicates the antiretroviral medications have been successfully used to suppress replication of the virus) and of her immune system status (another indicator of successful treatment). If Laura receives a bad result for either of these tests she becomes extremely worried, and seeks an immediate appointment with her treating physician to discuss the problem. Once when this occurred, she found it distressing that the doctor did not prescribe a new medicine or a change in treatment regime (a different type of antiretroviral medicines), but instead recommended rest, stress reduction and certain dietary changes. This is probably in part because given her economic situation (she makes a low
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salary as a domestic employee), resting and de-stressing is a luxury she cannot always afford. But it seems also due to her assigning greater importance to medicines than to these lifestyle changes, which she nevertheless tried to carry out, “because the doctor said I should do it,” indicating that physician recommendations are also important in a subaltern biomedical theory of health and illness. Women such as Patricia and Linda construct a holistic aetiology which privileges positive thinking over laboratory testing or describing their physical symptoms in detail to their treating physicians. Part of this positive thinking involves purposely not reading any information about possible side effects of medicines. Also important is to not discuss or listen to other seropositive people’s problems, in terms of their physical health, that are associated with HIV and its treatment. Patricia also says she tries to ignore most signs and symptoms of the disease, either those pointed out by doctors or that she herself might perceive. Patricia’s explanation of this behaviour is to say that if she reads about side effects or hears about symptoms her unconscious will then produce them. She also says that if she focuses on her own symptoms, she will make them worsen, and that this will depress her, which, as she says, “is what truly makes you sick, you know”. Both Patricia and Linda place great importance on not becoming depressed; this is more important to them than which antiretroviral medicines they are taking, because of the importance they assign to their emotional health. Linda says that sharing her feelings with her doctors, when she has appointments with them, is even more important than the clinical exams they do or laboratory tests they order. She thinks the antiretroviral medicines her physician prescribes are highly effective, but says they can only work properly if she is not depressed, or at least has unburdened herself of her psychological problems frequently with a number of people, including both professionals, family and friends. While both Patricia and Linda generally leave all treatment decisions up to their doctors, they have quite different styles in their use of health care. Patricia says she usually remembers to take her antiretroviral medicines on time, although she admits she sometimes forgets and occasionally decides not to take one of the medicines for a while, saying that “taking too many pills depresses me”. Patricia does not miss appointments with her treating physician without good reason and almost always fills her prescriptions for antiretroviral medications on time. To do this is no small feat, considering she has to travel over an hour and a half each way to the hospital where she receives her treatment. In general, the day-to-day construction of a life as a woman with chronic HIV living in a middle-income country, when medical attention is provided by a highly
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bureaucratic public medical institution such as the one these women receive care at, involves a great deal of work. The paperwork is abundant, which means that filling a prescription on time is quite time consuming: there are five different steps, with signatures or stamps of approval for each, in order to get a prescription filled at the pharmacy, and then there is a wait in line (or queue). If the medicine has not arrived, the prescription is only valid for a certain period of time, after which the paperwork must be renewed. Patricia, therefore, has a high level of commitment to managing her medical treatment, but receives care at only one institution and does sometimes miss appointments or fails to fill a prescription on time. Linda, in contrast, as mentioned before, receives different types of care at four treatment institutions, and also frequently accompanies her sisters and one of her brothers when they have their own doctor’s appointments. Linda has sought out expert care for both HIV disease and lupus, sees both a psychiatrist and a psychologist and also attends three different support groups for people living with HIV, one of which consists of group therapy sessions while the other two are less formal and are coordinated by the members themselves instead of a medical professional. Linda sells shoes and makeup through catalogues, and specifically states that the flexibility of this type of work allows her to make it to her numerous appointments at different health care institutions. She also says that she takes advantage of all these medical appointments, the group meetings and whenever she runs into friends, to talk about her emotional problems and unburden herself this way. Linda says she always adheres to her antiretroviral regime, never forgetting to take a pill. During the day, she carries her pills with her and takes them as prescribed, no matter if she is in a waiting room, participating in a support group or even riding on public transportation. Jackie conceives a naturopathic approach as central to maintaining health, although she combines this with certain aspects of biomedicine which help combat disease. She manages both her own health care and that of her daughter who, as occurs with many children living with HIV, has experienced frequent and severe health problems. During certain periods in her daughter’s life, Jackie has lived with her for weeks in the hospital, or has had to take her to doctor’s appointments almost daily for weeks at a time. When her daughter is in a health crisis or a period of bad health, which has been the case for much of her life, Jackie gives her daughter’s medical care priority over her own. She admits to missing her own doctor’s appointments, but never one for her daughter. Jackie also says that she has taken many different combinations of antiretroviral medicines without adhering completely to any but the most recent. There seem to be a number of reasons for her previous style
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of adherence to treatment; that is, why she did not always take her medicine at the prescribed times, did not always consume all the pills prescribed or did not take them continuously. For one thing, she says she does not always remember to take her pills; however, she recognizes that she never forgets her daughter’s antiretroviral medicines. In addition, she says that some of the medicines made her feel nauseas and vomit, so she would sometimes take only two of the medicines prescribed, but not the third (this is considered one type of non adherence and can cause the virus to become resistant to this treatment option). Finally, she says that after taking any one of these antiretroviral treatment options, she always felt the need to cleanse her body of the toxins they contain, by not taking them for a period and drinking medicinal juices or teas during that time. In my view, for Jackie this naturopathic theory of health influences her adherence to treatment in two ways. It requires cleansing periods when the medicines are not taken. The lesser ranking she gives to biomedicine seems to diminish the importance of overcoming the side effects (for example, through use of additional medicines to suppress nausea) in order to be able to take all the pills prescribed. Also, since Jackie believes that medicines are toxic, taking additional pills in order to cure nausea is not an attractive option. Nevertheless, different issues intertwine in Jackie’s situation, including this naturopathic logic, but also side effects caused by the medicines and the exceedingly difficult situation related to her daughter’s health, which in turn involves questions related to gender roles. It is interesting to note that currently Jackie says she is very adherent to the antiretroviral treatment she is taking. This situation also combines diverse influences: Jackie says this is perhaps her last chance, as she has exhausted all her other treatment options; her daughter has for several months been able to attend school and has not had any health crises; finally, for the first few months of treatment this specific antiretroviral combination has not made her feel nauseas. Hopefully, she will find a new way to combine naturopathy with biomedicine and not stop taking this treatment for a period of naturopathic cleansing. 25 4.
Conclusion
In this chapter, I tried to weave together theoretical concepts and ethnographic materials in order to show the impact of systems of meaning on the use and experience of health care, in terms of managing care, patient-doctor communication and adherence to treatment. In addition, my intention was to introduce the reader, albeit to a limited extent, to some of the extraordinary women who participated in this ethnographic study. They are not victims: they do not consider themselves, nor do they act, as
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such. Rather, they are vibrant, active women who also live with HIV, which they find quite similar to diabetes or cancer, although they think these latter two diseases are worse in every way than HIV/AIDS, except for the differing stigma. Hopefully I have achieved these goals to some small extent. It is likely that growing numbers of people living with HIV/AIDS in developing countries (where 90% of seropositive people live) will begin to receive antiretroviral treatment in the near future. Although at present only 4% of the six million people living with HIV/AIDS in settings that are resource-poor currently receive antiretroviral treatment, these medicines are becoming more affordable.26 They are also being offered by an increasing number of health plans in middle-income countries (as in Mexico and Thailand)27 and are being demanded in developing countries with serious HIV epidemics such as South Africa and India. 28 It would also seem likely that countries with severe epidemics like China and Russia will begin to offer their seropositive citizens some coverage with antiretroviral treatment. Furthermore, 21 of 28 countries receiving funding from the Global Fund for AIDS, Tuberculosis, and Malaria say they will use their grants for purchasing antiretroviral medicines.29 These processes will no doubt transform the experience and meanings of health and illness for those living with HIV/AIDS in middleand low-income countries, as has occurred in higher-income areas such as Europe, the United States or Australia as antiretroviral use has become the standard for people living with HIV.30 This is not in the least because antiretroviral treatment, when provided in the context of high quality medical care, can transform the symbolic and practical links between HIV and death, by prolonging and improving the quality of life of people living with HIV. In addition, antiretroviral medicines modify the experience of HIV disease in diverse ways, given that they imply fairly intensive, lifelong medical care and can have important side effects. This study aims to contribute to the understanding of this experience, and how to best provide high quality, cost-effective health care for the disease in similar contexts.
Notes 1
Marc Augé and Claudine Herzlich, “Introduction,” in The Meaning of Illness: Anthropology, History and Sociology, ed. Marc Augé and Claudine Herzlich (Sydney: Harwood Academic Publishers, 1991), 1-19; Michel Perrin, “Antropólogos y médicos frente al arte guajiro de curar,” Revista Montalbán 11(1981):466-478; Michel Perrin, El camino de los indios muertos: mitos y símbolos guajiros (Caracas: Monte Avila Editores, 1980).
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“Seropositive” refers to a person living with HIV; a positive HIV test indicates the presence of antibodies to the virus in the blood serum. 3 World Bank, Confronting AIDS: Public Priorities in a Global Epidemic (Washington, D.C.: Oxford University Press, 1997); Carlos Del Río and Pedro Cahn, “Terapéutica anti-retroviral y de padecimientos asociados al VIH/SIDA. Aspectos generales e implicaciones para América Latina y el Caribe,” in El SIDA en América Latina y el Caribe: una visión multidisciplinaria, ed. Jose Antonio Izazola-Licea (México City: FUNSALUD/SIDALAC/ONUSIDA, 2000). 4 M. Núñez et al., “Clinical Manifestations of HIV Infection in the HAART Era,” AIDS Reviews 3 (2001):216-222. 5 Rosemary Dray-Spira and France Lert, “Social health inequalities during the course of chronic HIV disease in the era of highly active antiretroviral therapy,” AIDS, 17 (2003):283-290. 6 Núñez et al., 2001. 7 R. Power et al., “A qualitative study of the psychosocial implications of lipodystrophy syndrome on HIV positive individuals,” Sexually Transmitted Infections, 79(2003):137-144. 8 S. Noriega Minichiello et al., “The Mexican HIV/AIDS surveillance system: 1986-2001,” AIDS 16 (sup. 3) (2000):S13-S17. 9 That is, people have social security payments deducted from their salaries and their employers also contribute to the social security system; when the health care services are actually used, no further payment is made for health care services (consultations with doctors, hospital stays, laboratory tests) or for medical prescriptions filled at the system’s pharmacies. 10 Jose Antonio Izazola Licea, ed., El acceso a medicamentos antiretrovirales en países de ingreso mediano de América Latina, (Mexico City, Fundsalud/SIDALAC/ONUSIDA, 2000). 11 Carlos Magis-Rodríguez et al., “La situación del SIDA en México a finales de 1998,” Enfermedades Infecciosas y Microbiología, 2000. 12 Clifford Geertz, The Interpretation of Cultures: Selected Essays (New York: Basic Books, 1973). 13 Martyn Hammersley and Paul Atkinson, Etnografía: Métodos de investigación (Barcelona: Paidós, 1994); Janice M. Morse and Lyn Richards, Readme First for a User’s Guide to Qualitative Methods, (Thousand Oaks, CA: Sage, 2002); Catherine Pope et al., “Qualitative research in health care: Analysing qualitative data,” British Medical Journal 320 (2000):114-116; Susan Lerner and Ivonne Szasz, eds., Para comprender la subjetividad, (Mexico City: El Colegio de México, 1996). 14 Augé and Herzlich, 1991; María Eugenia Olavarría, Cruces, flores y serpientes: simbolismo y vida ritual yaquis (Mexico City: UAMI/Plaza y
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Valdes Editores, 2003); Umberto Eco, Tratado de semiótica general, (Mexico City: Lumen, 1991); Claude Lévi-Strauss, The Savage Mind, (Chicago: University of Chicago Press, 1966). 15 Augé and Herzlich, 1991. 16 Perrin, 1980 and 1981. 17 Lévi-Strauss, 1966; Lorna A. Rhodes, “Studying Biomedicine as a Cultural System,” in Medical Anthropology: Contemporary Theory and Method, eds. Thomas M. Johnson and Carolyn F. Sargent (New York: Praeger, 1990): 159-73. 18 Lévi-Strauss, 1966; Olavarría 2003. 19 Pierre Bourdieu, Language and Symbolic Power, (Cambridge: Harvard University Press, 1984). 20 David Le Breton, “Cuerpo y antropología: de la eficacia simbólica,” Diógenes 153 (1991): 89-104; David Le Breton, Anthropologie du corps et modernité (Paris: PUF, 1990). 21 Eco, 1991; Margaret Lock and Nancy Scheper-Hughes, “A CriticalInterpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent,” in ed. Thomas M. Johnson and Carolyn F. Sargent, Medical Anthropology: Contemporary Theory and Method (New York: Praeger, 1990) 47-72. 22 The names of participants have been changed to maintain confidentiality. 23 Serostatus is the HIV status of the person’s blood serum, or whether a person is HIV positive or HIV negative. 24 Sadly, Patricia died of complications due to AIDS in the spring of 2004. 25 Almost a year later, Jackie says she continues to adhere to her treatment, and is taking flaxseed flour to avoid the occasional bout of nausea she has begun to experience; this is a naturopathic solution to her experience of the harshness or toxicity of the medicines, which does not involve “cleansing” through suspending use of one of the medicines, and thereby creating viral resistance to it. 26 UNAIDS, Report on the global HIV/AIDS epidemic 2002 (Geneva: UNAIDS, 2002). 27 M.M. Kitahata et al., “Comprehensive health care for people infected with HIV in developing countries,” British Medical Journal 325 (2002): 954-957. 28 M. Potts and J. Walsh, “Tackling India's HIV epidemic: lessons from Africa,” British Medical Journal 326 (2003): 1389-92; W. Stevens et al., “Antiretroviral therapy in Africa.” British Medical Journal 328 (2004):280-2.
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29
WHO Working Group, Draft: Scaling up Antiretroviral Therapy in Resource Limited Settings: Guidelines for a Public Health Approach, (Geneva: World Health Organization, 2002). 30 Power et al., 2003; Dray-Spira and Lert, 2003; Núñez et al., 2001; V. Cooper, et al. “Perceptions of HAART among gay men who declined a treatment offer: preliminary results from an interview-based study,” AIDS Care, 14(3)(2003): 319-328; G. Woolcock, Riding the Roller Coaster: Experiencing Transitions from HIV to AIDS (UNDP, HIV and Development Programme. Available at: http://www.undp.org/hiv/ publications/study/english/sp5enchsr.htm); World Bank, Confronting AIDS: Public Priorities in a Global Epidemic, (Washington, D.C.: Oxford University Press, 1997).
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Latina y el Caribe: una visión multidisciplinaria, edited by Jose Antonio Izazola-Licea. México City: FUNSALUD/SIDALAC/ONUSIDA, 2000. Dray-Spira, Rosemary and France Lert. “Social health inequalities during the course of chronic HIV disease in the era of highly active antiretroviral therapy.” AIDS 17(2003): 283-290. Eco, Umberto. Tratado de semiótica general. Mexico City: Lumen, 1991. Geertz, Clifford. The Interpretation of Cultures: Selected Essays. New York: Basic Books, 1973. Hammersley, Martyn and Paul Atkinson. Etnografía: Métodos de investigación. Barcelona: Paidós, 1994. Héritier, Francoise. Masculino/femenino. El pensamiento de la diferencia. Barcelona: Editorial Ariel, 1996. Izazola Licea, Jose Antonio, ed. El acceso a medicamentos antiretrovirales en países de ingreso mediano de América Latina. Mexico City, Fundsalud/SIDALAC/ONUSIDA, 2000. Kitahata, M.M., M.K. Tegger, E.H. Wagner, and K.K. Holmes. “Comprehensive health care for people infected with HIV in developing countries.” British Medical Journal 325 (2002):954-957. Lambert, H. and C. McKevitt. “Anthropology in health research: from qualitative methods to multidisciplinarity.” British Medical Journal 325(2002):210-213. Le Breton, David. “Cuerpo y antropología: de la eficacia simbólica.” Diógenes 153 (1991): 89-104. –––– . Anthropologie du corps et modernité. Paris: PUF, 1990. Lerner, Susan and Ivonne Szasz, eds. Para comprender la subjetividad. Mexico City: El Colegio de México, 1996. Levi-Strauss, Claude. Antropología estructural. Mexico City: Siglo XXI editors, 1979. –––– . The Savage Mind. Chicago: U. Chicago Press, 1966.
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Lock, Margaret and Nancy Scheper-Hughes. “A Critical-Interpretive Approach in Medical Anthropology: Rituals and Routines of Discipline and Dissent.” In: Thomas M. Johnson and Carolyn F. Sargent, eds. Medical Anthropology: Contemporary Theory and Method. New York: Praeger, 1990: 47-72. Magis-Rodríguez, Carlos, Enrique Bravo-García, Luis Anaya-López, Patricia Uribe-Zúñiga. “La situación del SIDA en México a finales de 1998.” Enfermedades Infecciosas y Microbiología, 2000. Mays, Nicholas and Catherine Pope. “Observational methods in health care settings.” British Medical Journal 311(1995):182-184. Mays, Nicholas and Catherine Pope. “Qualitative research in health care: Assessing quality in qualitative research.” British Medical Journal 320(2000):50-52. Morse, Janice M. and Lyn Richards. Readme First for a User’s Guide to Qualitative Methods. Thousand Oaks, CA: Sage, 2002. Noriega Minichiello, S., Carlos Magis, Patricia Uribe, Luis Anaya, Stephano Bertozzi. “The Mexican HIV/AIDS surveillance system: 19862001.” AIDS 16 (sup. 3) (2000):S13-S17. Núñez, M., V. Soriano, J. González-Lahoz. “Clinical Manifestations of HIV Infection in the HAART Era.” AIDS Reviews 3 (2001):216-222. Olavarría, María Eugenia. Cruces, flores y serpientes: simbolismo y vida ritual yaquis. Mexico City: UAMI/Plaza y Valdes Editores, 2003. Perrin, Michel. “Antropólogos y médicos frente al arte guajiro de curar.” Revista Montalbán 11(1981):466-478. ––––. El camino de los indios muertos: mitos y símbolos guajiros. Caracas: Monte Avila Editores, 1980. Pope, Catherine, S. Ziebland, Nicholas Mays. “Qualitative research in health care: Analysing qualitative data.” British Medical Journal 320 (2000):114-116. Potts, M., J. Walsh. “Tackling India's HIV epidemic: lessons from Africa.” British Medical Journal 326 (2003):1389-92.
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Power, R., H.L. Tate, S.M. McGill and C. Taylor. “A qualitative study of the psychosocial implications of lipodystrophy syndrome on HIV positive individuals.” Sexually Transmitted Infections, 79(2003):137-144. Rhodes, Lorna A. “Studying Biomedicine as a Cultural System.” In: Thomas M. Johnson and Carolyn F. Sargent, eds. Medical Anthropology: Contemporary Theory and Method. New York: Praeger, 1990:159-73. Saavedra, Jorge, Estela Redorta, Carlos Ávila. “Cuentas Nacionales en VIH/SIDA.” In Estimación de flujos de financiamiento y gasto en VIH/SIDA. México 1997/1998, edited by José Antonio Izazola Licea. Mexico City: Funsalud/SIDALAC/ONUSIDA/INSP/SSA, 2000. Saavedra-López, Jorge A., Carlos Magis-Rodríguez, R. Molina-Salazar, M.L. Gontes-Ballesteros, Carlos Del Río-Chiriboga, Mario BronfmanPertzovsky. “Costos y gastos en atención médica del SIDA en México.” In Situación epidemiológica y económica del SIDA en América Latina y el Caribe., edited by José Antonio Izazola-Licea. Mexico City: Funsalud/SIDALAC, 1998. (Available at www.sidalac.org.mx) Savage, J. “Ethnography and health care.” British Medical Journal 321(2000):140-2. Stevens, W., S. Kaye, T. Corrah. “Antiretroviral therapy in Africa.” British Medical Journal 328 (2004):280-2. UNAIDS. Report on the global HIV/AIDS epidemic 2002. Geneva: UNAIDS, 2002. WHO Working Group. Draft: Scaling up Antiretroviral Therapy in Resource Limited Settings: Guidelines for a Public Health Approach. Geneva: World Health Organization, 2002. Woolcock, G. Riding the Roller Coaster: Experiencing Transitions from HIV to AIDS. UNDP, HIV and Development Programme. Available at: http://www.undp.org/hiv/publications/study/english/sp5enchsr.htm World Bank. Confronting AIDS: Public Priorities in a Global Epidemic. Washington, D.C.: Oxford University Press, 1997.
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Note on Contributor Betania Allen (
[email protected]) is an Associate Researcher in Medical Sciences at the Chronic and Degenerative Diseases Division, Centre for Population Health Research, National Institute of Public Health, Mexico. She has a Master in Anthropological Sciences and is a Doctoral Candidate in the same at the Autonomous Metropolitan University at Iztapalapa.
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When the Diagnosed Talk: Ethnographic Narratives of Mental Illness Bindhulakshmi Abstract This paper tries to analyze the case histories and narratives of women undergoing psychiatric treatments and understands the experiential realm of mental illness within a particular cultural paradigm of Kerala, the South West costal state of India. The observations are drawn from an ethnographic field study among the diagnosed women who are undergoing psychiatric treatment. This paper gives primacy to the voices of diagnosed women and their experiences. But at the same time it also looks at other (dominant) institutional narratives to understand the engagements and negotiations happening in the process of identification, diagnosis, treatment and aftercare. Ones being diagnosed there is a tendency to call a woman as ‘irrational’ ‘abnormal’ and ‘dysfunctional’. But many times she negotiates with various other institutions in the society as a ‘rational’, ‘normal’ and ‘functional’ individual. Through case histories it examines how these women understand the illness and its effects in their identities and also how it shapes their relationship with their bodies. It also explores the experiences of diagnosed women in the everyday life especially when they engage with various institutions not only as diagnosed individuals but also as ‘normal’ women with multiple engagements and responsibilities. It is observed that being a diagnosed person is not the only identity these women have. They also have various other identities in their available cultural context. Through this exercise of analyzing the narratives and also by critically looking at the institutions involved in the making of diagnosed women, this paper tries to understand the construction of mentally ill women and also to understand how they negotiate and deal with these institutions in their every day lives. Analyzing the view points of psychiatrists, family members and other persons engage with them, this paper tries to draw the trajectories and differences of illness experience for different individuals. Key words: Ethnographic narratives, diagnosed experiences, multiple identities 1.
Introduction
This paper is based on ethnographic fieldwork in Kerala, a South Western coastal state in India. In this ethnographic account, the format of presentation is densely descriptive and evocative. The schism that prevails
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between expressive field experience and analytical critical discussions has been bridged in order to arrive at more concrete generalizations. However, these descriptive illustrations bring crucial glimpses, which are very significant in entering the terrain of mental illness and its construction and analysis. To the extent possible, I hope to chart out and analyse the experiences gathered from the institutional set ups that deal with the notion of mental illness as a corrupted form of ‘normal’ behaviour, which requires medical treatment of a particular kind. My work gives primacy to a more subjective understanding of the experiences of women who have been diagnosed as mentally ill. These unveil the idea of mental illness as one among the many embodied identities women carry. I have tried to explore the heterogeneity and differences of diagnosed women’s experiences, their strategies of engagement with different social and institutional frameworks and their negotiation of complex cultural contexts. Foregrounding the narratives of mentally ill women implicitly queries the contemporary mental health discourses which play a central role in diagnosing and labelling these women. We can see the absence of narratives of ordinary women diagnosed in most of the prominent narratives 1 within the mental health discourse. With my focus, I seek to explicitly include those women who may not have the capacity to manifest their diagnosed experiences through autobiographical writings, film, paintings etc. The women in our narratives are women who rarely have access to such media to express to express their diagnosed experiences, nor have the academic vocabulary to do so. In my study I have particularly selected ordinary women who are diagnosed and whose voices have never been heard before. Dominant medical discourses, too, have been analysed here to understand how they construct illness behaviour and how it articulates with the knowledges of the diagnosed women. The immediate question that then arises is why it is important to give primacy to women’s voices and what can be gained through this. 2.
Experience as an analytical category
Why does one want to study the mentally ill experience? There is a need to look at the subjective experience of mentally ill women. Here I find Sathya P Mohanty’s analysis interesting. 2 Mohanty argues that “personal experience” is socially and “theoretically” constructed and it is precisely in this mediated way that it yields knowledge. Quoting Naomi Scheman (1980) he argues it would be false to say that emotions are ‘inner’ possessions of an individual and that only the individual has the ‘privileged access’ to emotion’s meaning or significance. Mohanty continues: Rather our emotions provide evidence of the extent to which our deepest personal experiences are socially constructed, mediated
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by visions and values. The constructed nature of experience shows why there is no guarantee that my experience will lead to some common core of values or beliefs that links me with every other member of my cultural groups. Our experiences do not have self-evident meanings, for they are part of theoretical affairs and our access to our remotest personal feelings dependent on social narratives prejudices and even ideologies. 3 Drawing my theoretical framework partly from Sathya Mohanty, I would argue that while giving primacy to the subjective experiences of the diagnosed individual, I do not intend to treat their experiences as essentially self-evident or transparent. Rather, I acknowledge the social construction of these experiences, their mediation and the influence of shared cultural categories. Indeed, the mediated and constructed nature of the experiences of diagnosed women permits us entry into the modes whereby such experiences are framed, linguistically and existentially. While experience is surely differentially constructed in accordance with context or audience, the complete bypassing of the subjective understanding of distressed behaviour, or the privileging of certain discourse and experience as superior to others, effectively effaces marginalized identities and the ways in which those who bear them express themselves and negotiate with their world. Once the mental health system places such persons in the category of ‘the diagnosed,’ that category in effect imposes itself on every aspect of the lives of these women. It insinuates itself in minute actions at the level of the everyday. But the narratives presented herein reveal women chafing at their identity as “diagnosed.” It is by no means the only identity they hold or always one they readily embrace. They engage with the world as all women, in myriad other ways, based on their specific location, gender, sexuality, religion, class or caste. Trying to perceive them only through the lens of ‘diagnosed women’ would be hazardous for an understanding of various other ways they negotiate and deal with mental illness. The primary aim of this paper is not to reach any certain conclusion regarding the subjective experience of mental illness, but to map out the possible paths along which one might might proceed towards an intensive analytical exercise.
3.
Methodology adopted in the field
Two rounds of fieldwork were conducted in Kerala with the intention of collecting intensive ethnographic data. Since I had already established a rapport with many of the practitioners, and some of the patients and caregivers in my first phase of fieldwork, I believed that my re-entry would be easy. But revisiting the field was not as easy as I had
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anticipated. There were moments of confusion, suspicion and threat while entering into the world of diagnosed women. Some of them were reluctant to share their diagnosed experiences with me. But this was not the case with all women. Some of them were happy and excited to share their stories with me. These differences of approach by patients are also determined by the stigma attached to the illness, for mental illness is not a disease affecting only the individual but one which has possible repercussions in the entire social environment where these women live. The reluctance in talking about illness is also attached to the social and economic location of the patients. But for some women it was a relief to talk about their illness and for some others the idea of ‘privacy’ was not very familiar since their current social and cultural status did not allow them to keep their illness as a secret for long. The main methodology I used throughout this research project is ethnographic. “Ethnography is the study of people in naturally occurring surroundings or “fields” by means of methods which capture the social meaning and ordinary activities, involving the researchers participating directly in the settings, if not also the activities, in order to collect data in a systematic manner but without meaning imposed on them externally.” 4 While there are several critiques of ethnography in the social sciences from differing perspectives, postmodern theories have struck the most recent blow. Under the impulse of postmodernism, some ethnographers have challenged the claim that ethnography can produce universally valid knowledge by accurately capturing or representing the nature of the social world. 5 According to the critiques the claim that ethnography can represent social reality is unfounded and meaningless. The postmodern critique presents four chief problems for ethnography; attacking its representation of the field, the value it places on thick description, 6 the reliability and validity of data and the construction of ethnographic text. The questions raised by the postmodern critiques have been answered in different ways. One such response is the critical realism 7 theory attributed primarily to Roy Bhaskar (1989). My methodological position, and the interpretation of data were largely shaped by the critical realist approach, since I hope to look at not only the discursive manifestation of mentally ill experience but the material everyday reality of mental illness where the diagnosed women survive. The data collection involved two phases. In the first phase, I spoke to the extent possible with the doctors, psychiatrists, rehabilitation centers and non-governmental organizations (NGOs) working in the area of mental health. This also helped to get information regarding mentally ill women. Some case studies were also collected to get detailed histories of illness behavior. In the second phase, I completed intensive case studies. During this phase many family visits were also done to establish rapport with mentally ill women and their family members. Interviewing with mentally ill women and their family members was part of this exercise. In
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the first phase, most of my interaction with women and family members was in the outpatient clinics and the community mental health camps. I used this rapport to have more intensive interaction with them during the second phase of fieldwork. This kind of investigation was a threshold to enter into the world of the subjective experiences of mentally ill women. Narrative plays a fundamental role in understanding the subjective experiences of mental illness. Listening to human stories is a different experience. 8 People with “mental illness,” their relatives and the healers have many stories to tell. The need to narrate the experiences of illness is a part of the very human need to be understood by others even if on the very margins of communication. Anthropologists have relied upon stories to examine such things as folk explanations of illness, curing rituals, practical strategies for seeking health care and for the caring of ill family members, and interactions between healers and patients. Stories have played a part in these studies because anthropologists have routinely relied upon informant accounts either as a means of access to events they could not witness or as a way to learn something about their interlocutors’ experiences and beliefs about illness. 9 My initial family visits were filled with anxieties of acceptance. Except for a few setbacks I received a good response from most of the patients and family members. In the initial phase of my family visits I decided to collect the household details in the form of a survey. Since my intention was not to quantify the experiences of the diagnosed, I used this survey method only as a tool to understand the social and economic location of patients and care-givers and to analyze alongside the thick ethnographic details I hoped to collect later concerning their label as ‘the diagnosed.’ I collected a general profile of thirty patients (29 during family visits and one with a ‘diagnosed’ woman away from her ‘family’ since she was more comfortable talking to me apart from them). I was able to establish very good rapport with some of these women. I visited their houses again and again, stayed with them and communicated with them in various ways. Later I was able to extend some of my interactions with them in public places by going out with them and through other activities. This kind of interaction became an enjoyable activity for me rather than merely a strategy to do fieldwork. I was also learning new things by listening to them and interacting with them. Talking to them out in the public helped me to understand how society deals with them and how they deal with different societal contexts in their own way. Any study on the subjective experience of mental health will be incomplete without knowing the ‘lay’ knowledge related to the illness, how people express their psychological difficulties and what type of behaviour is considered as ‘abnormal.’ In order to understand the local knowledge better it is necessary to study the social and cultural particularities of the geographic location. Hence attempts have been made in the study to understand the ‘lay’ knowledge and grass-root thinking of
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mental illness and what are the particularities of the area which make the study significant. Any attempt to view an illness or a syndrome within the cultural dimensions significantly necessitates a closer understanding of the systems of belief and attitudes related to the illness. 4.
Use of narratives in understanding diagnosed experiences
The use of narratives in diagnosed experiences uncovers the social construction of those experiences. Narratives play a significant role in understanding the subjective experiences of human feelings. Such experiences are theoretically mediated and socially constructed, and they are an important tool in understanding the meaning of diagnosis. Diagnosed women use various strategies to communicate and negotiate with the social and cultural world around them. With the use of various narrative techniques they try to make sense of their feelings. These may be oral narratives, various expressive narratives 10 or others. In the context of mental illness, we can encounter multiple narratives, including those of the diagnosed individual, practitioners and caregivers. In the narratives of caregivers, the person with the illness is sometimes located as a helpless, incapable individual who needs care. Sometimes the narratives of illness posit the mentally ill experience as a positive factor which may be employed in the negotiation to fit into the everyday world. There is a need to understand how women talk about, display or enact their own distress. The biomedical approach often negates the bodily experiences of women, by medicalising and pathologising biological processes, and perceiving these as abnormal or dysfunctional in comparison to the implicit standard of biological normality signified by the male body. 11 An exploration on the experiential dimension of mental illness within the institutional setting provides an entry point to the study of the subjective experiences of mentally ill women. The personal or the experiential realm therefore provides a theoretical framework insight to the women’s everyday lives: “As a theoretically constituted category, therefore, experience, would help not only in critiquing dominant and masculinist regimes of knowledge, but also in establishing the validity of women's knowledge. It helps to de-stabilise not only the epistemic primacy of disembodied objectivist knowledge and methodologies, but also, it is hoped, the other constraining realities in women's everyday life.” 12 How then do we operationalise the experience of not only individuals but also of entire groups? How do we understand the embodied experience that serves in a variety of ways to substantiate women and their particularities? I find Dorothy Smith’s (1990) elaboration extremely useful in this context. Smith’s was centrally concerned with how the phenomenon of mental illness is constructed in and through official discourses of psychiatry, medicine and social work. Although aware of Foucault’s (1973) existing work in this area, she is critical of his reluctance to move
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analysis beyond the level of the text, and of his tendency to ignore the role played by unequal gender relations within psychiatric and medical institutional practices and discourses. 13 Smith argues that the process of institutionalization involves the identification of a given individual as a sufferer from a form of mental illness which, in turn, requires that someone in the patient’s immediate sphere of activity – a member of the family, legal guardian or friend – engages in an informal process of labeling by which this person’s behavior is interpreted as erratic, unpredictable or self-destructive. So there is a complex and highly mediated process occurring here, wherein a person’s actions are identified as ‘abnormal’ by others close to them, who then approach professionals with this non-expert diagnosis. Medical professionals scrutinize this information, and/or interview the individual already labeled as deviant or abnormal and make their own diagnosis about possible mental illness. The potential consequences are, of course, very serious for all parties concerned and can lead to pharmacological intervention, involuntary detainment, and worse. 14 The meaning the experiences of “mental illness” have for the women depend on diverse socio-cultural, community and linguistic contexts. Recognizing such contexts therefore requires that we listen to the multiplicity of women’s voices. The subjective experiences of diagnosed women also contrast with the way that ‘lunacy’ is constructed through authoritarian voices like courts, hospitals, the media and mental health professionals.. The body is the site of intense conflict between women diagnosed with mental illnesses and their caregivers (both familial as well as institutional), as well as between the women and the medical establishment which reinforces (or forces) certain practices of restraint and constraint on the women as a direct consequence of diagnosis. For instance, feminist theoreticians have challenged the positioning of the female body as the “cause” of premenstrual syndrome (PMS) and experience, 15 while Ussher 16 has shown some parallels between PMS and earlier diagnostic categories such as hysteria and neurasthemeia. The role of cultural factors such as beliefs and expectations in the experience of PMS are neglected when it is located exclusively in a biomedical model. The existence of PMS as a ‘disorder’ negates the legitimate anger and depression that arise because of the social constructs that regulate and control women’s behaviour. When the topic of PMS arose with women during fieldwork, I noticed that most of them self-report the problem. This self-reporting by women about PMS needs to be explored further. Does the recognition of mood changes during menstrual period as a medical problem leave any room for the legitimacy to women’s emotional expressions or does it merely fix their expressions into a readily available medical category? During my first phase of fieldwork I spent time in the female ward of the government mental health center, Kozhikkode, Kerala. I
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visited the family therapy ward and the pavilion ward for women patients. The pavilion ward is mainly for the women patients are in the chronic stage of their illness and some of them were in a controlled state. There was a rehabilitation unit working in connection with the pavilion ward. The main activities in which these women were engaged were making medicine wrappers for the hospital’s use. Most of the women in this ward were “abandoned by families” and some have been residing here for many years. This raises the question of the family’s role as a care-giving unit and the need for an alternative mechanism for these women. Initially, I was wary about whether I would be accepted in this setting but contrary to my fears, the women accepted me without any hesitation. Most of them were curious to know why I was there and most were willing to share their stories with me. It was quite evident that even though many of the women had not been visited even once by their family members, the women still thought about their family members and many of them wanted to return to their families. I was asked by many of these women if I could do something to help them rejoin their families. In contrast to this, the residents of the family therapy ward were with at least one of their immediate relatives and most of the caregivers were women. 5.
Selected women’s stories from the field
In this section my attempt is to enter into the spaces inhabited by women with mental illnesses to offer some insight into their life and to their treatment. This section is based on personal communications with diagnosed women and their relatives. It asserts the need for an ordinary language in dealing with subjective distress in the everyday situations of women. I met Lakshmi Amma 17 (age 47) in the Kuthirawattam government mental hospital, where she has been a resident of the pavilion ward for the past eight years. The pavilion ward is supposed to be for the inmates who do not show severe symptoms. Lakshmi Amma explained to me that she never had any illness and it was her relatives and neighbours who put her in the mental hospital to snatch away her properties. She belongs to the Nair 18 community. According to her she does not have immediate relatives now. Her father had left home for another woman when she was a child leaving her mother, herself and two younger brothers. After that it was her grandmother who was the breadwinner of the family. Her childhood was one full of misery. Since they were very poor, she left home at the age of thirteen and went to another town in India with a distant relative to work as domestic help. After a few months Lakshmi Amma heard the news of her grandmother’s death. She was not financially able to return to Kerala and she said she still felt extremely guilty for not being able to see the dead body of her grandmother (she started weeping). When she returned home, she could only see a bereaved
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mother struggling with her two children. Lakshmi Amma felt extreme guilt and helplessness about not being with her mother during this crisis and she later decided to stay with her mother to help her. She started doing domestic work in the neighbouring houses and earning money, but within a few months she had to face the deaths of her youngest brother and mother. After that she stayed with another brother, who was involved in local politics. All her neighbours worked for a rival political party. 19 One day she heard the news that her brother had committed suicide by consuming poison. Lakshmi Amma claims it was a murder due to political rivalry and thereafter she was upset and suspicious of the people around her. She says one of her neighbours forcefully took her to the mental hospital and that they have encroached on her property. Now Lakshmi Amma wants to go back home but at the same time she fears that the neighbour who took her to the mental hospital might kill her. She said she is suspicious of everybody now and she does not understand why the authorities put her in the hospital. Traumatic memory prevailed in her narration, which was disjointed and repetitive. After talking to Lakshmi Amma I enquired about her situation with the psychiatrist in charge of the ward, and he immediately responded that her condition was still bad. In his opinion Lakshmi Amma is an absolute case of paranoid personality and her narration provides the proof. He explained his helplessness to discharge her in such a condition. After a brief conversation with the doctor I went through her case history and it was written clearly that she was admitted to the hospital with severe ‘paranoid schizophrenia.’ In Amma’s narration so many issues emerge, especially issues about property, about the ‘culturally and socially mandated feminine duty’ which she feels she failed and about which she continues to be guilty , and about the political rivalry in the area she lived in. If we look only through the lens of the already established ‘scientific’ knowledges about Lakshmi Amma, we would fail to see the other dimensions of her life, such as the issue of guilt. This emotion is a culturally constructed one. She is expected to perform a certain culturally bounded duty of nursing and nurturing associated with her gender role. If we examine Lakshmi Amma’s narrative from this angle we will notice that she easily fits into other dominant narratives about gendered behaviour. This is not to say the gender role is ‘better’ than her current status of being woman diagnosed as mentally ill. Both succeed in constructing women in limited ways. But if we do not acknowledge how gender works we fail to understand other analytical dimensions as well. Lakshmi Amma talks about the unnatural death of her brother and she is suspicious about his death. But from the narratives of the doctor and also from the case record, which we usually take as ‘the authentic knowledge,’ we can only learn that Lakshmi Amma is a clear case of a ‘paranoid schizophrenic.’ Lakshmi Amma might be paranoid, but there is always a possibility that she was creating the narratives for me, in my role
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as a researcher. Her narration depends on her current social and cultural locations, and also the social and cultural identity of the researcher. Furthermore, there is a need to look at her narratives on equal terms with those of doctors and caregivers because the knowledge of the psychiatrists and caregivers is also constructed and manipulated based on the context. Whatever the reality of Lakshmi Amma’s medical condition, the medical establishment works only within the rigidity of the “symptom” framework and is clearly unable to deal with the feelings of grief, loss and bereavement which continue to haunt her. In order to develop this argument further, we can examine the narratives of Shakuntala and Shylaja, who are sisters. I met both of them during one of my outpatient ward visits and later visited their house. Shakuntala is the second of four siblings and Shylaja is the youngest. Both of them are being treated at Kuthirawattam government mental hospital,. The ‘problem’ (according to their brother who was talking to me most of the time during my family visit) appeared first in Shylaja, and after a few months Shakuntala also started showing some symptoms of illness. He complained about their aggressive behavior at home and ‘idleness.’ According to him, both of them are reluctant to do household chores. He said that they were nice to outsiders but very aggressive at home. When asked to explain the cause of their illness, he said, “It is because they are worried about their unmarried status.” Shylaja was reluctant to talk to me but Shakuntala did so after a short period of interaction. She said she would like to work outside and does not like to sit at home. According to her, everybody blames her for not doing work at home. She admitted that she becomes violent at times at home and she explains her behaviour thusly: “These people [family members] do so many things which I don’t like.” She was very happy when the NGO person who accompanied me offered to give her vocational training. I revisited both sisters when I went for my second period of fieldwork and the situation had changed enormously. This time their brother was not there and both women spent time with me and talked about their problems. Shakuntala had started going for the vocational training camp conducted by an NGO and she was very happy that she left home everyday. Shylaja was very depressed about her inability to work like Shakuntala. Shylaja’s mother told me that it is very difficult to send Shylaja out of the home because she could not manage travelling alone on the bus. Shylaja goes out of her house only for the regular medical check up in the mental hospital’s outpatient clinic and is then accompanied by her mother. While I was leaving their house, Shylaja came and held my hand tightly and asked me whether I could help her out of her current situation in some way. She said she wanted to work like Shakuntala but she does not control her anger and aggressive nature at times. But according to Shylaja’s mother she cannot go and work anywhere in her present condition. As a caregiver, Shylaja’s mother felt utter helplessness
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and she hoped that things would eventually change with continuous medication. She thinks that Shakuntala’s condition had improved because of the medication. From the narratives provided by the caregivers (brother and mother), we realize that both the sisters are extremely emotional. Moreover, their mother says that the condition of Shakuntala improved because of medication, and she hopes for a similar outcome with Shylaja. Shylaja admits that she is aggressive and she wanted to control that emotion but she explains her helplessness. She desperately wants to go out as Shakuntala does and wants to work, but thinks people around her always blame her. Her caregivers are not ready to send her because they think she is incapable of managing things all alone. The caregiver (in this case her brother) thinks she cannot manage alone and he expects her to work at home. But when Shakuntala expresses her desire to go out or to work outside the home, it does not get acknowledged. Providing care for a diagnosed mentally ill person is not an easy task. Listening to the caregivers’ view is very important to further understand the illness behaviour, as well as to give proper care and treatment to diagnosed individuals. But in this case the caregivers and the doctors determine everything for these two women, leaving little room for the expression of their own choices. The women’s choices are not acknowledged because they are considered to be ‘over emotional.’ But at the same time, we should look at the caregivers emotions. They express their anger and frustration in many ways throughout the interviews and their emotions are legitimized, while the expressive emotions of Shakuntala and Shylaja are marginalized because they are diagnosed women. All emotions are socially and culturally constructed, including those expressed by caregivers, medical practioners or patients. But when we look at these emotions only through the paradigm of ‘diagnosis’ we are blinded to other interpretations. For example, when their emotions are interpreted through their position as ‘diagnosed women,’ they are considered to be mere symptoms of their mental state. Alternatively, we could read Shakuntala’s and Shylaja’s eagerness to get out of home and work outside as a form of rebellion against the authoritarian power structure of the family or resistance against the normative family structure and women’s legitimate right to get out of that structure. Instead of bluntly criticizing the practice of care giving, we may need to look further into the politics of care giving and the different dimensions of care giving practices. The practice of care giving is not a uniform entity. There are hierarchies in taking responsibility of care giving. In each family one or two members are likely to assume the responsibility for providing care. As we have seen in the above case, the mother assumed the responsibility of care giving, while the brother, who is the male head of the family and also the breadwinner, was never involved in the ‘burden’ or responsibility of care giving as an everyday practice. The mother is the caregiver and appears to be sympathetic with Shylaja’s
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pain. Despite this, she is not permitted to take any decision on Shylaja’s going out to work because such decision-making is in the hand of the male head of the family. Another narrative sheds further light upon the multiple identities women carry in addition to their diagnosed identity. I met Kanchana in the vocational training unit of an NGO when she was in the post-treatment period. She was very happy to share her story with me. In contrast to Shakuntala and Shylaja, Kanchana is very much a ‘family person.’ She believes that without the support of her family, especially her husband and children, she may not have been able to recover to the extent she had. According to Kanchana, she was ostracised from her neighbours during her traumatic period. The NGO has provided her with vocational training in embroidery and block printing on clothes. According to one of the training staff in the vocational training unit, Kanchana was one of the most efficient and competitive members. Kanchana also believes that she now has recognition within the community. But when I met Kanchana the second time, she was going through a difficult period. Her husband was with her and he said she had another onset of her illness. I engaged in a conversation with her and she indicated that her relationships with her neighbours were strained. In contrast to her earlier satisfied and happy disposition, she was distressed and unhappy about the current situation. She had stopped her embroidery and block printing work that had given her pleasure, but indicated that she wanted to get back to those jobs again, once her medications are stopped. When asked why she stopped doing these works, Kanchana said it is because of her husband and children’s compulsion and she says they are extremely careful and considerate about her condition. But while her second onset required her to stop work – work which helped her earn some money – it did not stop her from doing her work as a home maker. In this way, Kanchana’s narrative is similar to the earlier example. Diagnosed women are expected to do certain jobs, which are considered part of their feminine role, but are not expected to be involved in other kinds of work. Shobha was first diagnosed when she was thirteen years old and was studying in the 8th standard. Her family members first identified the ‘symptom,’ and her illness continued for a long time. She narrates her experience like this. “I was taking bath and I did not come out for a very long time. My mother called out. I didn’t respond. They panicked. They broke the bathroom door open and saw me washing myself without even looking at them. When they took me out of the bathroom I became violent. They took me to a psychiatrist. … That was the beginning. ” Shobha says she was depressed for sometime before that but that nobody had noticed her mood change. Then she narrated an incident of childhood sexual harassment. She said soon after that incident she had these feelings of extreme anger, guilt and fear. But she could not express these to any of her relatives or friends because she was afraid of the consequences. She
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eventually became very moody and refused to talk to people. But nobody noticed her mood change. After a few months, the ‘incident’ in the bathroom occurred, a tangible expression which made her relatives panic. She was hospitalized for a very long time and received Electro Convulsive Therapy. She said that she could not even talk to the psychiatrist about this incident of sexual harassment. Now Shobha has emerged from the trauma of illness and is working with a feminist organization in Kerala. After she joined the organization she started talking about this sexual harassment incident and also about the long traumatic period she had endured for over a decade. As a diagnosed woman, Shobha never had the opportunity to talk about the traumatic incident she had undergone. Now that she has transcended the label of “the diagnosed” and she has the support of a feminist organization, which gives legitimacy to her emotions, she can discuss the incident. While narrating the event to me, Shobha was quite angry about what happened to her in her childhood and also about her helplessness in expressing her anger toward the injustice that characterized her experience following diagnosis. She was also angry about the ECT treatment she received. The anger Shobha expresses may be a product, in part, of the support she gets from the women’s organization with which she works. She was previously incapable of expressing her feelings or perhaps it had been subsumed by her label as a diagnosed woman. Perhaps she did not then have the linguistic or cognitive tools to examine her experience. Even if she had expressed the same emotion at the time of being diagnosed, it would not have been acknowledged as legitimate anger. Her anger would have been simply wrapped up as yet another “symptom” within the biomedical model. 6.
Family, Gender and Distress: factors shaping the every day discourse of mental illness
Most of the cases described above contextualise the family as a major site where illness behaviours are first identified and named but we have found certain cases where the family fails to provide care and individuals must rely on institutions. Most of the time, the family is involved as a primary caregiver. In each family, one or two members are likely to assume the largest share of care giving and through this we can discern the politics of care giving in any particular setting. For instance, in the case of Shakuntala and Shylaja the mother appears to sympathise with Shylaja’s pain but is not permitted to allow her to go out to work because such decision-making is in the hands of male head of the family. Another dimension I want to highlight concerns the politics of institutionalization. As stated earlier when the family finds it difficult to manage or finds that it is unable to provide care giving, the next available alternative becomes an institutional one. Under the guise of care and
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protecting the mentally ill, most of the institutions act as a place to keep the mentally ill away from the public. How does care giving work in this context? Social exclusion was one the preferred means of dealing with mental disorders, as illustrated by the lunatic asylums of the late 19th and early 20th century, which housed those who were not considered to be ‘normal.’ 20 Care giving mechanisms continue to contribute to the social exclusion of diagnosed individuals by putting them in care giving institutions – including public institutions like hospitals and other rehabilitation centers and private institutions – which isolate them from the rest of the society. Is there any kind of alternate space available for these women, which would be sensitive to the needs of the diagnosed? Functional/nonfunctional, diagnosed/non-diagnosed, working woman/non-working woman are alternating and opposed states and identities that women adopt, when circumstances warrant, for their survival. The mentally ill experience is one important embodied identity among many other identities. As Kanchana illustrates, it is quite evident that some women seek to have these other identities recognized. But when we fail to see or accept their other embodied identities, and categorize them only as mentally ill individuals, we fail to get the details of the different ways they negotiate with the world around them. But this quest for legitimacy as a non-diagnosed person does not make sense for all the women. Let me cite an example from a personal conversation I had with a friend of mine who was diagnosed for severe depression, personality disorder and self-harm. She says nobody acknowledges her experience as a self-harmer. This is in contrary to my earlier argument. She says, “my mental illness constitutes what I am today. I am a woman, I am a feminist, I am an upper caste, I am a bisexual and I am a self –harmer too.” She says in any of the discussions in the feminist circle, her identity as a self-harmer does not get any legitimacy. This invokes questions about who wishes to bear the identity of a ‘diagnosed’ individual and who does not wish to carry that identity. Those women I met in the field were different and they would not like to keep the tag of ‘diagnosed.’ But this friend of mine who is a feminist academic asserts her need to carry that identity, which she believes is a part of her ‘self,’ one that has changed her thought processes and helped her change her worldview. She gets offended when people do not acknowledge her experience as a ‘diagnosed’ individual. Our current social and cultural locations determine the way we want to construct our selves. Those women with whom I have interacted in the field are definitely not in a social position to emphasize their diagnosed identity as a ‘legitimate identity’ to carry along. But the diagnosed identity may also be a useful strategy to play with, and they are aware of this. During one of my visits to a rehabilitation centre, for example, I overheard a conversation among the patients about a neighbour who comes and disturbs everyday activities of this rehabilitation centre. They were thinking of a strategy to
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deal with this menace and one of them said “let’s go and beat him up…. nobody will say anything, everybody will consider it as some madwomen’s actions,” at which all of them laughed. This was one example where women showed their awareness of how the “label” could be used in a powerful way to deal with a problem without social sanction. In this context I use the term ‘multiple identity’ in order to state how various identities work within the mental health discourse. Mental illness has been reconfigured as a problem with the social field, no longer merely the ‘property’ of an individual. This is a factor worth analyzing in how mentally ill women negotiate with social space. Indian women experience social space in such binary oppositions as private/public, danger/safety, pure/polluted. 21 It is worth analyzing how the social space is being constructed for and by mentally ill women and how the individual as a diagnosed being deals with the world around her. In the case of diagnosed women within the family, the social space is being constructed within the boundaries of the ‘safe home,’ locating the family as the caregiver. But sometimes this social space goes beyond the ‘private’ sphere and spreads to the ‘public’ spheres. Very often the family cannot take responsibility of the mentally ill individual. Moreover, the family is a complex entity and cannot be viewed as a transparent category. 7.
Conclusion
The embodied experience of mental illness focuses on the diagnosed women and their particularities in different ways. The woman ‘diagnosed’ is differently positioned from men and also from other women, even within the same social and cultural context. It has already been noted that the expression ‘the experience’ does not indicate a single category or one that is comprehensible to the individual alone. The experience is also socially and culturally constructed. Often there is a kind of negotiation in their speech between the already established objective knowledge and their personal subjective knowledge. By acknowledging this subjective experience we therefore try to draw a trajectory of the gendered manifestation of mental illness and look critically at the established and hegemonic scientific knowledge. The analysis I have drawn here helps me to understand certain social patterns of the gendered nature of illness and its manifestations.
Notes 1
Prominent narratives in this context include mainstream media narratives such as films, magazines, newspapers and other institutional narratives such as those of caregivers or doctors.
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Satya P. Mohanty, “The Epistemic status of Cultural Identity: On Beloved and the Post colonial condition.” In Paula M.L Moya and Michale R Hames-Garcia (eds.), Reclaiming Identity: Realist Theory and the Predicament of Post Modernism (Orient Longman: Hyderabad, 2001), pp. 29-66. 3 Ibid. 4 John D. Brewer, Ethnography (Buckingham: Open University Press, 2001). 5 James Clifford and George Marcus, Writing Culture: The Poetics and Politics of Ethnography (Berkeley: University of California Press, 1986). 6 Clifford Geertz, Interpretation of Culture (New York: Basic Books, 1973). 7 Critical realism is an attempt to explain the relationship of social structure and social action and is grounded in the work of Roy Bhaskar. Bhaskar explains that social reality is not created by people (the error of naturalism), yet the structures that pre-exist do not occur independent of human agency (error of structuralism) but are reproduced and transformed by our action and everyday activities. See Roy Bhaskar, 1989 8 Mattingly classifies three types of narrative forms. Narratives are eventcentered, experience-centered and narratives do not merely refer to past experience but create experience for their audience. See Cheryl Mattingly, Healing Dramas and Clinical Plots: The Narrative Structure of Experience (Cambridge: Cambridge University Press, 1998). 9 Ibid. 10 Expressive narratives in this context imply the emotional (performative) narratives of feeling of anger, frustration, etc. 11 Ann Oakley, “Beyond the Yellow Wall Paper.” In Oakley, Telling the Truth about Jerusalem (Oxford: Blackwell 1986) and Jane M. Ussher, Body Talk: The Material and Discursive Regulation of Sexuality, Madness and Reproduction (London: Routledge, 2001). 12 Sharmila Sreekumar, Scripting Lives: Narratives of Dominant Women in Contemporary Kerala (Unpublished PhD thesis, University of Hyderabad, 2001). 13 Dorothy E. Smith, Texts, Facts, and Femininity:Exploring the Relations of Ruling (London: Routledge 1990). 14 Michael E. Gardiner, Critiques of Everyday Life (London: Routledge Gardiner, 2000). 15 Jane M. Ussher, Women’s Madness: Misogyny or Mental Illness (Hemel Hempstead: Harvester Wheatsheaf, 1991). 16 Jane M. Ussher, ed., Body Talk: The Material and Discursive Regulation of Sexuality, Madness and Reproduction (London: Routledge, 2001). 17 The major focus of my study is diagnosed women in their family settings. But in this case I have found Lakshmi Amma very much entangled with domesticity. In her memory, the idea of her early domestic
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life comes quite often and she always wishes to go back to that. 18 Nair is a dominant caste in Kerala. 19 The political clashes between these two parties are still very prominent in this area. 20 Laura Davidson, “Human rights vs. Public Protection: English Mental Health Law in Crisis?” International Journal of Law and Psychiatry, 25, 5 (2002): 491-515. 21 Rajeswari Sunder Rajan, Real and Imagined Women: Gender, Culture and Postcolonialism (London: Routledge, 1993).
Bibliography Bhaskar, R. Reclaiming Reality: A Critical Introduction to Contemporary Philosophy. London: Verso, 1989. Brewer, John D. Ethnography. Buckingham: Open University Press, 2001. Clifford, James and George Marcus. Writing Culture: The Poetics and Politics of Ethnography. Berkeley: University of California Press, 1986. Davidson, Laura. “Human rights vs. Public Protection: English Mental Health Law in Crisis?” International Journal of Law and Psychiatry, 25, 5 (2002): 491-515. Foucault, Michel. Madness and Civilization: A History of Insanity in the Age of Reason. New York: Random House, 1973. Gardiner, Michael E. Critiques of Everyday Life. London: Routledge, 2000. Geertz, Clifford. The Interpretation of Cultures. New York: Basic Books, 1973. Mattingly, Cheryl. Healing Dramas and Clinical Plots: The Narrative Structure of Experience. Cambridge: Cambridge University Press, 1998. Mohanty, Satya P. ‘The Epistemic status of Cultural Identity: On Beloved and the Post colonial condition.’ In Paula M.L Moya and Michale R Hames-Garcia (eds.) Reclaiming Identity: Realist Theory and the Predicament of Post Modernism. Orient Longman: Hyderabad, 2001. Oakley, Ann. “Beyond the Yellow Wall Paper.” In Ann Oakley, ed., Telling the Truth about Jerusalem. Oxford: Blackwell, 1986.
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Smith, Dorothy E. Texts, Facts, and Femininity:Exploring the Relations of Ruling. London: Routledge, 1990. Sreekumar, Sharmila. Scripting Lives: Narratives of Dominant women in Contemporary Kerala. Unpublished PhD thesis, University of Hyderabad, 2001. Sunder Rajan, Rajeswari. Real and Imagined women: Gender, Culture and Postcolonialism. Routledge: London, 1993. Ussher, Jane M. Women’s Madness: Misogyny or Mental Illness. Hemel Hempstead: Harvester Wheatsheaf, 1991. Ussher, Jane M. ed. Body Talk: The Material and Discursive Regulation of Sexuality, Madness and Reproduction. London: Routledge, 2001.
Acknowledgments This paper evolved from one aspect of my doctoral research. Thanks to Rowena Robinson for going through the earlier drafts of this paper and for her valuable suggestions and comments. Discussions with D.Parthasarathy, Ratheesh and Sharmila also helped me to refine my ideas at different stages of this work.
Note on Contributor Bindhulakshmi is a research scholar in the Department of Humanities and Social Sciences, Indian Institute of Technology, Bombay, India. Her dissertation examines Gender and the construction of mental illness in contemporary Kerala. She can be contacted at
[email protected] Address for communication: Department of Humanities and Social Sciences, Indian Institute of Technology, Bombay, Powai, Mumbai, 400076, India.
Critical Excess: Sex, Drugs, Intervention Aaron Goodfellow Abstract
Public health strategies geared towards preventing sexually transmitted diseases (STDs) configure those who suffer from drug and alcohol addiction as a source of knowledge for understanding the social interactions associated with the transmission of sexually transmitted infections (STIs). Subjects seeking treatment for addiction are often on the receiving end of both intervention and research initiatives designed to address the behaviors that place one at risk for STDs. The goal of such interventions is to alleviate the pain of addiction and disease, and to address the more general social conditions that place subjects at risk. This paper addresses such an imagination of suffering by analyzing narratives compiled from residents in a drug treatment centre in Baltimore, Maryland. The paper explores the implications of modelling interventions on the assumption that STI’s and drug addiction are afflictions that reside within individual bodies. My entry into this discussion is the nuanced accounts of the connections between lived relationships, institutions, and ethical discourses offered by residents of the treatment centre. I hope to show how the institutional imagination of time as linear offers an opportunity to detect predetermined notions of social breakdown along with ideas concerning the appropriate timing for intervention. Such an imaginary tends to delimit the social at the cost of failing to recognize the emergence of possibility and hope. My analysis traverses three moral worlds connected by the appearance of institutional signatures on the formation of self, namely that of a care provider for the chemically dependent, the subject of a clinic based ethnographic interview, and a member of a community defined by the treatment for drug addiction. Key words: social suffering, medicine, sexually transmitted disease, drug addiction, violence, HIV/AIDS, time, family, public health, sexuality. 1.
Introduction
I am sitting in the meeting hall of an in-house drug treatment centre in Baltimore Maryland. I am part of a team of researchers who are investigating the social networks that place adolescents at risk; or, provide protective measure against sexually transmitted diseases in Baltimore. People in drug treatment are interesting to the researcher because of what they might say about the institutional circumstances that place people at
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risk for STDs. The interest in the social circumstances is informed by the movement in public health towards locating the factors that constitute an individual’s risk for sexually transmitted disease within the specificities of social relationships. 1 This perspective stands in opposition to the idea that disease somehow moves through a population naturally, i.e., as though the history of disease is unencumbered by social conditions. 2 Medical researchers are not well regarded by the people with whom I am sitting. The origins of their sentiment might be found in the words of Moses Jones, the organization’s founder and the leader of today’s meeting. Moses often warns residents against taking part in the medical research programs that have transformed Baltimore into what he calls a “guinea pig city.” Moses is quite public in expressing his opinion that Baltimore’s medical institutions exploit those most in need of their services for the sake of advancing research agendas. He thinks the medical establishments in Baltimore should be gifting their services, instead of forcing the vulnerable to submit to the humiliation of selling their bodies and life stories to temporarily interested parties. For Moses, medical research programs are uncomfortably compatible with the traffic in human misery that defines the life of a dope fiend. “What better way to get twenty-five, fifty, or a hundred bucks for the next pill of dope,” says Moses. “All you have to do is go down there, sign up, tell a bunch of lies, or let them stick you full of tubes and needles, and they pay you a bunch of money. And the best part is the dope man is right there on the street, right next to the hospital there waiting to take you money.” “Who does that serve?” Moses asks from the head of the hall. 3 Rumors also circulate that Baltimore area hospitals are responsible for the high prevalence of HIV and hepatitis cases found among drug users in the city. The rumours hold that researchers have introduced the viruses that cause AIDS and hepatitis into the heroin found on Baltimore streets in order to guarantee a sufficient pool of research subjects. Here, the work of rumour casts suspicion that those who operate in the name of medical research are poisonous to those they claim to serve. I do not bring these criticisms to light in order to condemn Baltimore’s research institutions. Rather, I am interested in how these criticisms bring to light the multiple meanings associated with medical research and the knowledge it produces. The fact that these multiple meanings are attached to participation in medical research challenges the assumption that the meaning of disease, or the subject and object of medical research is in any way stable and accessible to an impartial gaze. Instead, we learn how medical knowledge is always already folded into pre-existing webs of signification. These webs extend the meaning of medical research across multiple relationships and connected nodal points that exceed the grasp of any one person or institution. One consequence is that everyday forms of subjectivity can become displaced
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in encounters with medical institutions. Displacement occurs because language is never a simple vehicle for transmitting knowledge; rather, language also causes things to happen. 4 I believe it is important for researchers to respond to such vulnerability (both their own and that of others) in ways that are not dehumanizing. We dehumanize when we engage in what Arthur Kleinman calls the professional deconstruction of (an)other’s words. 5 A professional deconstruction is underway when complex assemblages, such as those found above, are transformed into the symptoms of pathology. Such would be the case if Moses’s words are understood as nothing more than the symptoms of an underlying mental illness or the mere expression of a false consciousness born from socio-economic inequality and dependency. The danger of hearing his words as symptoms lies in the all too easy possibility of transforming marginal lives into pathology. The alternative is to bear witness to what is at stake in making such claims. It is by bearing witness that the stake in being vulnerable to institutions can be brought to bear against the movements of institutional discourses. 6 The recent work of Meyers, Leonard, and Ellen 7 describes the importance of situating the meaning of illness within local moral worlds by showing how clinic-based interviews (and other ethnographic encounters) provide a forum for creating the selves that institutional discourse all too often translate into objects. As Meyer’s et al. show, the forum of the clinic-based interview operates as a device for putting highly nuanced claims about the meaning of difference, social life, and suffering into institutionally authorized narrative forms. 8 Their research calls on scholars to remain attuned to how methodology creates its own subject and object of analysis in the hope of avoiding the punishing transformation of pre-existing assumptions about the meaning of care, health, illness, or sex and drugs, into universal and objective truths. When the fields of epidemiology, public health, and anthropology refuse to engage in self-reflexive dialogue, the role institutional interests in sex, drug use, and violence play in constituting the subject is forgotten. 9 The alternative is to embrace the idea that subjectivity – as well as the meaning of sex, drug use, and violence – is emergent, and cannot be isolated in discrete, objective, and bounded units of time. It also means recognizing that research protocols asking subjects to describe who they have sex with and how they chose their sex partners, serve to remove the subject from analysis. 10 I hope that advancing such a critical perspective will bring forward the conditions of possibility for studying STDs in Baltimore, and will illuminate that there are ethical implications to embracing particular notions of success and failure when working towards disease prevention. I am interested in what must be forgotten, what presents itself as a possibility, and what becomes visible as a result of the gap between institutional imaginations of life and lived relationships. The project does
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not aim to illuminate blind spots within institutional discourses. It concerns, rather, the sociality of illness itself. 2.
Institutions and Suffering
The meeting hall is crowded and filled with the usual cacophonous echo produced by the heavily amplified voice of Moses mixing with the constant background murmur of the audience’s commentary on his words. Occasionally the noise recedes, when a member of the house is moved to take part in the business at hand; learning about the disease of chemical dependency and the twelve steps of the recovery process. On this day, Moses was teaching epistemology, or describing how an addict might know where they are supposed to be and what they are supposed to be doing, in the moment, to proceed with their recovery. Moses’ discussion was interrupted when the woman I call Reanna stood up and began speaking. 11 Reanna began very quietly, but the volume and intensity of her voice grew into a wailing shout as tears and anguish overran her efforts to speak. Reanna began by asking Moses to help her understand where she is “supposed to be at right now,” because she was “going through something big” that made it very difficult for her to “stay in her recovery.” She went on to explain that she was uncertain about her ability to keep from using drugs because her son, who had been placed in the custody of her parents when she was sent to prison for drug possession, was in trouble. Reanna’s worry was fuelled by the fact that she was confined to the premises of the program site for one year as a condition of her parole. If she left to help her son, she would be sent back to prison. Reanna explained that her son had recently been arrested for dealing drugs, and had been released into the custody of his grandparents after spending a short time in jail. Upon his release, he went back to hustling on the street, and was again wanted by the police. The grandparent’s response was to expel Reanna’s son from both their home and their lives. Reanna’s son initially left the premises, but he returned later to break all of his grandparent’s windows. In response, Reanna’s father let it be known that he was going to find and kill Reanna’s son. Reanna first caught wind of the trouble from a neighbour. Reanna next heard from her sister, who phoned to say that all the family’s trouble was owing to Reanna’s history with drugs and incarceration. Reanna then went on to recount how her sister said that Reanna deserved to die, and that both she and her son will reaped what they deserve if they should be killed. Reanna’s immediate impulse was to leave and go back to smoking heroin to heal the pain, but she was conflicted. She thought that she might save her son by turning him in to the police. The consequences
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would not only be her son’s incarceration – a scenario she knows the dangers of first hand – but her own return to prison for violating the terms of her parole. Moses responded by transforming Reanna’s dilemma into a pedagogical moment. The lesson to be learned was that nobody could tell Reanna, or anyone else in the program, what he or she had to do to remain in recovery. Moses said, “This is a tough love program, and you figuring out where you gotta be and what you gotta do [to remain clean] is matter between you and God.” Reanna responded with anger. She would end up back on the street and dying, she said, without Moses’s guidance. Moses again said that he could not say what Reanna had to do because that was a spiritual matter between Reanna and God, and nobody else. Only God knew what Reanna has to go through on this earth. Moses then reached out to the members of the audience and asked if they were willing to show Reanna their support. Everyone in the hall responded, and Moses directed the most eager volunteers to surround Reanna in a circle of prayer. Reanna was immediately encircled; and physically supported by a group embrace, as shouts rose from the audience calling for the Reverend Tom, the program’s spiritual leader. The shouts rose in volume until Tom emerged from the back of the meeting hall. Raising his hands and eyes to God, he called the audience to join him in prayer. Tom then laid hands upon Reanna, as he and the audience collectively asked God for guidance on how to best help their sister and neighbour in her time of need. Reanna’s sobbing and agitation slowly subsided as she gradually began to sway to the rhythm of the audience’s collective prayers. Tom then began yelling, “Satan’s mad, because Jesus is glad! Satan is mad because Jesus is glad!” Still shouting, he demanded an “a-men” from the audience. “Can I get an a-men? Can I get an a-men? Can I get an a-men?” Three months later Reanna was “okay,” or so it seemed, according to some measures. Reanna was still a resident in the program, and she still attended the twice-daily meetings. The outcome of the events Reanna described, and the current status of her family relationships is not known. Ethical protocols do not allow me to inquire into Reanna’s state of wellbeing. All I can say is that Reanna remains in recovery. 3.
Critical Excess
One can only say Reanna is doing “okay” by occupying an institutional position that places the treatment of chemical dependency as the highest priority in Reanna’s life. Moses occupies this position, and it is towards advancing this perspective that Moses has devoted his life. The moral energy that carries his conviction arises from his telling of biographical experience. Moses often describes how he literally pulled
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himself out of the gutter to overcome a heroin addiction to become the founder and leader of one of the largest drug addiction treatment centres in Baltimore, while teaching people about the treatment for chemical dependency. Moses’s use of biography works to obscure the imprint of institutional signatures on the creation of his subjectivity. In the figure of Moses, the presence of medical, religious, and experiential knowledge about treating chemical dependency converge to bring institutional and non-institutional forms of intervention into focus at different times. In Moses the sometimes easy, sometimes not so-easy convergence of medical, family, and religious discourses about the treatment of chemical dependency materializes in concurrently with the telling of scenes of suffering that are known exceed the grasp of any. In Reanna and Moses’s exchange we hear how suffering takes form and becomes visible as subjects move in and out of different, but connected, institutional settings. As part of treatment, Reanna must recount her story, and share her pain with others. Failing to do so, means that Reanna remains beyond the reach of help. Here, we begin to see how different institutional settings (the twelve-step meeting, the clinical encounter, or the ethnographic interview) bring suffering to the foreground, categorizing it, through treatment, into different types. By rendering suffering visible (through a range of techniques), institutions intensify knowledge of how subjects suffer differently, and how different forms of suffering respond to intervention. Institutional knowledge thus works to develop specific knowledge of that which exceeds its grasp, and seeks out modes of intervention into it. The question I wish to pose concerns the stakes in treating some forms of suffering as institutional excesses, beyond the scope and scale of intervention, and others as belonging within the purview of institutional concern. Might institutional claims about success and failure hinge on the presence of this excess? If so, how? After all, Moses (as well as a doctor in an STD clinic) is well aware of the suffering that exceeds the grasp of the institution’s intervention, yet success is claimed when someone like Reanna remains in pain. Clearly, we are not talking about blind spots in institutional discourses. Something else seems to be at stake here. To embrace the position that sees Reanna as being “okay” means configuring Reanna’s suffering of family violence free from heroin as indicative of her commitment to health. If Reanna rejected such an institutional picture – for example, by reverting to heroin use or leaving the program – the refusal would be understood as a spiritual failure on Reanna’s part. The institution is shielded from the possibility that Reanna’s return to drug use might be a sign of its own failure by framing what Reanna needs to do to remain drug free, as beyond its reach. Institutional success, on the other hand, depends on Reanna’s making certain choices. She must continue to choose to suffer the pain of
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her relationships in accordance with the institution’s notions of wellbeing, and she must continue sharing this suffering publicly. It is helpful here to recall Foucault’s insights about the production of docile bodies through the development and application of the clinical gaze. 12 (Basing notions of success and failure on the institutional formulation of different types of suffering, which then can be named as either appropriate or inappropriate, confirms Foucault’s view that suffering bodies are expected to open themselves up to the clinical gaze.) 13 Such an image of the body under the clinical gaze also serves to describe how institutional knowledge frames the suffering associated with chemical dependency. (This includes being at high risk for STDs, a consequence of a metabolism that is currently running amok.) It is the goal of intervention to bring the errant and inappropriately suffering body back into alignment with normative notions concerning (social) life. It is important to remember that Foucault does not describe the clinical gaze as a purely repressive mechanism. The gaze is productive, and works to give birth to the kinds of narratives and subjectivities found here. If the convergence of power and gazes upon the suffering body gives rise to spectres of death, hopelessness, and failure, it also gives rise to hope, the idea of success, and life itself. It is the combined spectres of death and life that configure the subject as fully answerable to moral discourses about the redemptive value of certain forms of suffering, and their transcendence. 14 Forms of suffering that fall outside the scope of intervention, such as the pain associated with family relationships, take on the appearance of being disembodied, ordinary, and part of everyday life that must be endured. Other forms of suffering, such as those associated with chemical dependency or sexually transmitted infections, are understood as inappropriate and are targeted for elimination through the application of specific techniques. Since Reanna’s suffering is understood as the product of relationships, it is pictured as residing in the spaces between bodies, and the contingencies of personal biography. Here, the cultural image of the family as the product of the pre-cultural biological facts of heterosexual reproduction, links up with an institutional commitment, to transform Reanna’s pain into an unfortunate part of living. Family relationships must be endured, whereas addiction to heroin, on the other hand, can be treated. Addiction councillors would never say that the suffering caused by family relationships and the suffering of addiction are distinct, and doctors who treat STDs would never say the diseases they treat are separable from relationships, yet evidence-based medical interventions configure disease and illness as a pre-cultural condition that affects natural biological bodies. Within such a picture of disease, the social features of illness become a limit to clinical practice and intervention. Culture is pictured as something crucial to the treatment of disease only in the sense
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that it must be worked through if medical science is to operate to its maximal effect. It was perhaps the need to work through the limit imposed upon medical science by social life that guided the historical movement in the direction of treating STDs as nothing more than infectious diseases. 15 This movement has worked to remove the suffering of relationships from treatment, and it has inspired intervention strategies that emphasize the technical modification of individual behaviour (e.g. negotiated condom use), as the most effective means for preventing STDs. 16 If attention were paid to Reanna’s story, we would hear a different relationship between suffering, health, and transcendence being formulated to the one found in the discourse of epidemiology and public health. In the language of public health and epidemiology, Reanna’s words operate as evidence, and her life is pictured as a case study in perhaps the behavioural outcomes associated with family violence and drug use. Reanna’s voice, by contrast, expresses the role family narratives, genealogies of violence, ecstatic experience, bearing witness, and endurance play in the struggle to live. 4.
Chronic Suffering
To show how Reanna’s story is very much about institutional interventions into STDs, I would like to introduce a woman I call Stacy. 17 Stacy volunteered to be interviewed after her friend told her about our work in the treatment centre. Stacy wanted to take part in the project because her participation might “someday help the kids coming up.” I understand Stacy’s participation as informed by the institutional idea that telling one’s story and reaching out to others, are part of achieving health. The following narrative was distilled from a two-hour conversation that took place in the back office of the drug treatment centre run by Moses. I say the narrative was distilled because Stacy’s own use of words moved between an extremely fragmented mode of speaking in which language seemed inadequate for expressing the meaning of past events and an informational mode where events were confidently recounted in a sequential list of known connections. My efforts are not geared towards creating an official or master narrative. The goal is to illuminate the disparity between institutional imaginations of social life and the unfolding of lived relationships. Stacy is 31 years old and HIV positive. She has two children, Darren and Tabitha, each conceived with a different man. At the time of the interview, Tabitha was fifteen and Darren was nine. Tabitha lives with her father in a small suburb of Washington D.C. Tabitha was conceived when Stacy was in high school and has lived with her father’s family ever since Stacy was fourteen, and left her mother’s home in consequence of being stabbed by her mother. Darren is in foster care in Baltimore.
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Stacy’s goal is to reunite with Darren one day but she stays away from Tabitha. Stacy feels that Tabitha is happy where she is, and, as a teenager, past the point of needing her attention. Stacy also feels that attempting reconciliation would be asking Tabitha to carry an unbearable emotional burden that her daughter does not deserve. Stacy was born in North Carolina and moved with her mother to Baltimore when she was fourteen. Stacy’s mother relocated to be closer to her own biological family after Stacy’s father died from a brain aneurism. Stacy’s father was in the Army in North Carolina but had been discharged prior to his death, as a result of mental illness associated with posttraumatic stress from serving in Vietnam. Stacy remembers her father as being violent, prone to hallucinations, and as regularly beating her mother in her presence and that of her sisters. Stacy never mentioned suffering any direct physical abuse at the hands of her father but described in detail the violence her mother enacted on her. The violence preceded the move to Baltimore but escalated when Stacy’s mother began caring for the children alone. Stacy’s mother had never been employed, nor had she taken care of the family’s finances prior to her husband’s death. The pressure of new financial needs drove Stacy’s mother to school (so that she could have a well-paying career) and into stressful relationships she had never before negotiated. Stacy believes that the pains and pressures associated with her mother’s having to go to school while taking care of her three children fuelled the escalation of her mother’s violence, drug use, and drug dealing. Her mother enlisted Stacy’s services as a drug dealer, teaching her both to cook and to sell crack when she was fourteen. Stacy attributes her mother’s choices to the family’s pressing financial needs One should not assume there was a time when violence, drug dealing, and drug use did not mark Stacy’s understanding of family. Stacy’s father came back from Vietnam as a “functioning junky,” and Stacy’s mother was always “a big partier on the base.” Stacy’s interpretation of events and their consequences can, I think, illuminate how institutional discourses about the meaning of drug dealing, family violence, and drug use extend themselves into the realm of self formation by providing a vocabulary for rendering suffering and time visible. By linking factual events together into a descriptive narrative, Stacy comes to craft herself in the present as a person whose history aligns with institutional modes of intervention. Stacy brought attention to the institutional fingerprints marking her narrative when she asked for a copy of the transcript that would be produced from our conversation. She said she wanted a copy because it would help her “play the tape back,” which in turn provided Stacy with an extra means of knowing “where she’s at in her recovery.” Here, the image of life as possessing the characteristics of an audiotape speaks to an
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institutional commitment to a linear concept of time, just as it speaks to Stacy’s preconception of our conversation as producing a product. Linking the achievement of health to repeatedly playing one’s tape back, works to establish the subject as accountable for discovering the presence of pathology in the minutia of one’s life, both past and present. Through the process of recounting one’s life, in increased detail, the subject comes to be defined by the specific patterns and characteristics that are thought to make up the life of the addict. In this way, an entire life comes to be pathologised and the subject forever remains an exemplar of an addict’s life. We hear the subject becoming the image of pathology in Stacy’s description of how violence in her family contributed to her own incarceration and drug use. Stacy identified and spoke in great detail about two events in her relationship with her mother, which she configured as causal to her “running wild, and being off the hook since [she] was coming up [growing up].” The two events were the stabbing she suffered when she was fourteen and arguing with her mother, and her suffering a fractured skull after her mother hit her with a frying pan when she was twenty-five. Stacy described the stabbing as one result of a mental condition that sometimes makes her mother violent, which was aggravated by her mother’s then-active addiction to crack. The incident with the frying pan, in Stacy’s narrative, was fuelled by Stacy’s efforts to get her mother into a treatment program. What remained tacit in Stacy’s initial “replaying” of these events was how her experience of violence became folded into an alternative understanding of family and its possibilities. How family violence can come to cement future possibilities for care only emerged when Stacy began describing her experience in prison. The emergence of an alternative future form of relationship from one rooted in a history of violence provided the hope Stacy needed to continue living. A. Forgiveness Stacy is well aware of the fact that many define her relationship with her mother as pathological. She also understands her relationship with her mother is problematic when it comes to achieving the future promised by institutional interventions. Nevertheless, Stacy still cries and needs her mother whenever things get tough and nothing is more painful to her than prolonged and forced separations from her mother. Stacy forgives her mother, and makes sense of the current status of her family relationships by situating the meaning of violence within genealogies of kinship. Stacy had articulated the physical abuse she suffered as a child in connection with the violence her father perpetrated against her mother. She has a different father from her two sisters, which means her sisters were spared the retaliatory beatings Stacy often received
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after her father would hit her mother. Stacy also knows that her mother was molested as a child by a cousin, and that her grandfather was an abusive, violent man who would beat Stacy’s mother when he was drunk. Stacy’s knowledge of such legacies enables her to locate the cause of the sometimes explosive violence that runs through her family within debts and credits that span multiple generations. Being able to fit the current family configuration into these genealogies provides Stacy with a means to always forgive and to never remain angry with her mother, even though the violence continues to this day. Stacy’s knowledge of the genealogical relationship between violence and the future proved crucial when Stacy was pregnant with Darren and in prison for drug possession and distribution. She called in debts accrued from past violent events in order to ensure the future care of her unborn child. While pregnant and in jail, Stacy sat down with a social worker and drafted documents that would ensure that her child would not be placed in foster care while she was incarcerated. Rather, Stacy wanted her child to be placed immediately in the custody of her mother and then returned to Stacy when she was released. The documents were notarized and a judge put the arrangement into effect. Stacy felt peace after the decision because her mother had pleaded for the opportunity to right the wrongs of her violent past by caring for Stacy’s child. The possibility of such care promised restitution for Stacy and her mother and a future form of family to emerge. B. Becoming a Mother Stacy met the man with whom Darren was conceived while attending college in Washington, D.C. The pair met in a bar, and soon thereafter began living together and dealing drugs. Darren’s father, it turned out, was married to another woman, during the time he and Stacy were together. Stacy lost contact with Darren’s father when she was incarcerated. His explanation for the separation concerned his inability to contact Stacy while she was imprisoned. Stacy and Darren’s father surprisingly encountered one another again some nine years later when both were residents in the drug treatment facility where Stacy now resides. While in treatment, Stacy found out that Darren’s farther was married, just as he found out that Stacy was HIV positive and had been throughout their relationship. Stacy described how seeing him at the meetings caused great anxiety at first because he surely had found out about her HIV status through other people in the program. (She had long ago stopped hiding the fact that she was positive and she spoke openly to her friends about the disease.) Stacy’s fears and reservations were eventually assuaged by coming to realize that she could not change the past, and that Darren’s father had never taken any measures to protect himself from her, just as
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she had never taken any measures to protect herself from him. Stacy understood their mutual disregard for institutional discourses about safe and ethical sex as absolving them both of any responsibility for the other’s future wellbeing. The wound that cut the deepest, and caused the greatest lingering pain for Stacy, was his marriage. Stacy was arrested as a result of the drug dealing that she, Darren’s father, and her mother were involved in while Stacy was in college. In order to pay tuition, the three were living together in Stacy’s mother’s house, and selling drugs out the front door. Stacy’s mother ended up selling drugs to an undercover narcotics agent, which resulted in the house being raided. All three were subsequently arrested, but only Stacy had previous conviction and only she was forced to serve a long-term sentence. Darren’s father and Stacy’s mother, on the other hand, were both released on bail and given suspended sentences. It was while Stacy was in prison that she gave birth to Darren. Stacy first began taking care of Darren after her release from prison after four and a half years. Her first experiences with Darren were less than positive, and Stacy found her child to be hateful and manipulative. Stacy understood Darren’s actions as arising from his sense that she owed him something for getting locked up and being absent for the first years of his life. Stacy was able to slowly build a motherly relationship with Darren by “establishing and enforcing strict boundaries.” She knew how to repair her relationship with Darren because she had taken parenting classes in prison and had received motherly care from the older women with whom she was incarcerated. Stacy described in great detail how she had learned what it means to be a mother by being mothered herself while locked up. It was through her contact with these motherly figures that she learned to give up her anger and her desire to fight against everything and everyone in the jail. Stacy speculates that had she been able to give up her anger earlier she would not have been forced to serve four-and-a-half years of a five-year sentence. Stacy is also very clear that were it not for serving out the majority of her time, and experiencing the prolonged care of her fellow inmates, she would not have learned what it means to be a mother. In fact, Stacy says she would either have killed herself or been killed by someone else had she not been locked up with these particular women. Stacy pointed to a certain irony about the place of these women in her life when she recounted how, as a teenager, she had been arrested and marched through the prison as part of the city’s “Scared Straight” program. Stacy described the situation as follows: When they [the women in prison] got all up in my face about selling drugs and living ignorant, I gave it right back. I jumped right in swinging. The guards broke it right up, or
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we would have kept at it. I was mean and full of rage. But, they said, “Just you wait. We’ll be here waiting when you come back. Just you wait.” And when I came back and was all sick from the heroin, they were the ones taking care of me. I thought they was gonna kill me, but they was putting cold towels on my face instead. The women in prison taught Stacy that being a mother means staying clean, providing a nice home for Darren, and going to work from nine to five so she could have the money and time to care for Darren. As a result, Stacy got a job working for MCI [a communications company] and received housing through government subsidies when she was released from jail. The job and assistance enabled Darren and Stacy to live together for a short period of time, but also provided the conditions for Stacy’s relapse and Darren’s removal from her care by social services. Here is how Stacy described the situation. After I got out of prison, I wanted too many things and got overwhelmed. I wanted everything just the way it’s supposed to be. But I didn’t know how it’s supposed to be. So I have this pretty picture in my head, and it just don’t work out that way. And I couldn’t take it. I probably could have, I just chose not to. I chose to flip out. Stacy started using again after being clean for eighteen months. Social services removed Darren, and placed him in foster care about three months after Stacy’s return to drug use. Darren’s father tried to get involved after Stacy’s relapse, but Stacy pushed him away, choosing instead to have Darren made a ward of the state. Stacy felt that Darren’s father has gone through enough, and that she could and should “spare him some things in this life.” Stacy revealed later that she had become involved in an abusive relationship and was again pregnant at the time of the hearings. She and Darren’s father had gone through something similar while together, and the end result was extreme physical abuse, escalated drug use, and a self-induced miscarriage in retaliation for the violence. Stacy would replay this scenario again after Darren was placed in foster care. Stacy used and sold drugs for about three years after relapsing. During this time, Stacy spent three months in the treatment centre where she now resides, spent time getting de-toxed in a psychiatric ward in Baltimore, and was expelled from several methadone programs. Stacy said the only way she was able to procure medical treatment for the heroin addiction was by going to a psychiatric ward and convincing the doctors that she was going to kill herself if they did not commit her. Stacy did this by intentionally overdosing on the doorstep of the hospital.
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It was the result of Stacy becoming physically exhausted, or “tired,” that she checked herself back into the program where she currently resides. It was here that Stacy kicked the heroin cold turkey, choosing to treat the withdrawal symptoms with acupuncture and massage therapy provided by the program. Stacy describes the pain of the withdrawal as being so intense, and as going on for so long, that she came to know God on a first name basis. But Stacy also knows that “anybody can get clean in Baltimore, but only for a minute”. C. Risking Health Stacy discovered she was HIV positive while she was in high school. She learned she was positive by going to a clinic to have a syphilis test. Stacy described the discovery as being “really no big deal” because a number of relatives were living with HIV and she had cared for an uncle who had died from AIDS. Stacy also had friends who were HIV positive, so she knew about the sociality of living with AIDS. Stacy described how her diagnosis fit into her life as follows: I’ve seen people die. I’ve seen people shot at. I’ve been stuck up. I’ve been kidnapped. I’ve been through all that. I’ve had a fast life. I went through some ups and downs with it [being HIV positive] but I was never in denial about it. I got a lot of support. I was open, and it just never hit. I understand the “it” that never “hit” to be an event, like a moment of discovery, that would disrupt the temporal flow of experience and recast Stacy’s subjectivity in terms of a before and an after. It is only within the institutional imagination of diagnosis as an event in linear time that clearly marks a before and an after that Stacy might come to identify with, or be identified as a patient. Stacy articulated the displacement of the category patient when she described how she has never felt or become sick from HIV and has never sought treatment for the disease. We see this in effect when Stacy attributes her current health concerns, or the crisis that brought her to seek treatment, to the exhaustion that comes from living on the streets as a heroin addict. The medical care Stacy has received has either come indirectly through drug treatment programs or the criminal justice system. It was while Stacy was incarcerated and pregnant that she first received treatment for HIV. Her release from prison meant the cessation of her medical care, but she did not feel the need to attend to her condition. It is important that the moments brought to light in Stacy’s narrative be viewed in terms other than the breakdown or failure of the social order. To view the social world narrated by Stacy as the result of broadly conceived institutional failures is to forget that institutional
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figures, such as Moses, STD doctors, and epidemiologists know about the suffering Stacy speaks of in great detail. It is also to forget the agential movements and strategies that Stacy articulates as constituting the social worlds she inhabits and her extensive knowledge of their risks. 5.
Conclusion
Within the temporality defined by genealogies of violence, the meaning of suffering HIV and syphilis exists on a continuum with the meaning of suffering the violent events Stacy describes as having taken place in her family. The only difference is that the suffering of a sexually transmitted disease has been technically isolated, named as a physical ailment, and fit into an institutional regime of treatment. The present day echoes of one’s dead father having served in Vietnam, being stabbed by your mother, or selling crack at the age of fourteen have not. Such suffering fails to register, or is perhaps reconstituted as mental illness, to the exclusion of an account for the disembodied pain brought about by politics being enacted on (an)other’s body, institutional neglect, or family. Stacy and Reanna’s words should make us pause here, since it is the indeterminate legacy of experiencing such social events that prefigures Stacy’s account of drug addiction and HIV. Such things as the risks for STDs brought about by state conflicts, the law, or the pain of relationships are seen as beyond the scope and scale of medical interventions. The suffering that comes from the legacy of such disembodied events is thus transformed into a critical excess that allows the image of institutional success to present itself. The irony is that institutional ethical discourses about suffering and its address develop in conjunction with methodologies that evoke and name the very forms of suffering that must be delimited and excluded, if successful interventions are to take place.
Notes 1
Paul Farmer, “Pathologies of Power: Health, Human Rights, and the New War on the Poor,” (Berkeley: University of California Press, 2003). 2 George W. Goler, “The municipality and the venereal disease problem,” American Journal of Public Health, 6 (1916): 355-359. 3 Personal Correspondance, January 2004 4 John L. Austin, How to do Things with Words, (Cambridge: Harvard University Press, 1962). 5 Arthur Kleinman, Writing at the Margins: Discourse Between Anthropology and Medicine, (Berkeley: University of California Press, 1995).
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6
Arthur Kleinman and Veena Das, “Introduction.” In Violence and Subjectivity, edited by Veena Das and Arthur Kleinman et al (Berkeley: University of California Press, 2000). 7 Todd Meyers, Lori Leonard, Jon Ellen, “The clinic and Elsewhere: Illness, Sexuality, and Social Experience Among Young African American Men in Baltimore Maryland”, in Culture, Medicine and Psychiatry, 28 (2004): 67-86. 8 Ibid. 9 Philippe Bourgois, “Anthropology and Epidemiology on Drugs: The Challenges of Cross-Methodological and Theoretical Dialogue,” The International Journal of Drug Policy, 13 (2002): 259-269. 10 Ibid. 11 Personal correspondence, January 2004. 12 Michel Foucault, Birth of the Clinic; An Archaeology of Medical Perception. Translated by Sheridan Smith, (New York: Pantheon Books, 2004). 13 Ibid. 14 See, for instance, Talal Asad, Formations of the Secular; Christianity, Islam, Modernity, (Stanford California: Stanford University Press, 2003) and Veena Das, Critical Events: An Anthropological Perspective on Contemporary India, (Dehli; New York: Oxford University Press, 1995). 15 See, for instance, Goler, “The Municipality and the Venereal Disease Problem” and Barbara Gutmann Rosenkrantz, “Damaged Goods: Dilemmas of Responsibility for Risk”, in Milbank Memorial Fund Quarterly, 57, 1 (1979): 1-37. 16 Paul Farmer, “Pathologies of Power: Health, Human Rights, and the New War on the Poor,” (Berkeley: University of California Press, 2003). 17 Personal Correspondence January, 2004
Bibliography Asad, Talal. Formations of the Secular; Christianity, Islam, Modernity. Stanford California: Stanford University Press, 2004. Austin, John L.. How to do Things with Words. Cambridge: Harvard University Press, 1962. Bourgois, Philippe. “Anthropology and Epidemiology on Drugs: The Challenges of Cross-Methodological and Theoretical Dialogue,” The International Journal of Drug Policy, 13 (2002): 259-69. Das, Veena. Critical Events: An Anthropological Perspective on Contemporary India. Delhi; New York: Oxford University Press, 1995.
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Farmer, Paul. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press, 2003. Fee, Elizabeth. “Sin vs. Science: Venereal Disease in Baltimore in the Twentieth Century,” The Journal of the History of Medicine and Allied Sciences, 43 (1988): 41-64. Foucault, Michel. Birth of the Clinic; An Archaeology of Medical Perception. Translated by Sheridan Smith. New York: Pantheon Books, 1973. Goler, George W.. “The Municipality and the Venereal Disease Problem.” American Journal of Public Health. Vol 6 (1916): 355-359. Kleinman Arthur. Writing at the Margins: Discourse Between Anthropology and Medicine. Berkeley: University of California Press, 1995. Kleinman, Arthur and Das, Veena. “Introduction.” In Violence and Subjectivity, edited by Veena Das, Arthur Kleinman et al. Berkeley: University of California Press, 2000. Meyers, Todd, Leonard, Lori, Ellen, John. “The Clinic and Elsewhere: Illness, Sexuality, and Social Experience Among Young African American Men in Baltimore Maryland.” Culture, Medicine and Psychiatry, 28 (2004): 67-86. Rosenkrantz, Barbara Gutmann. “Damaged Goods: Dilemmas of Responsibility for Risk,” Milbank Memorial Fund Quarterly, 57 (1979): 1137.
Note on Contributor Aaron Goodfellow is an ATPM (Association of Teachers of Preventative Medicine) Sexually Transmitted Disease Prevention Post-Doctoral Research Fellow at the Johns Hopkins University School of Medicine, Baltimore Maryland.
Acknowledgement This research was made possible by NIH training grant T32A1050056, NIAID R01 A149530. I would like to thank Dr. Jonathan Ellen and Dr. Jonathan Zenilman of Johns Hopkins University School of Medicine, Professors Veena Das and Pamela Reynolds at The Johns Hopkins University Department of Anthropology, and Lori Leonard at the Johns
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Hopkins Bloomberg School of Public Health for their continued support and guidance. I would also like to thank Jacky Jennings, Samantha Gottlieb, Samantha Fenno, Ross Parsons, Naveeda Khan, Richard Baxstrom, Todd Meyers, and Erin Koch for their skilful critical readings and insightful comments. It is to me alone that all excesses and shortcomings are to be attributed.
‘Normal Gone Bad’: Health Discourses, Schools and the Female Body Emma Rich, Hannele Harjunen, John Evans Abstract In recent years it has been argued that both the formal and informal contexts of education are heavily imbued with a ‘culture of healthism’ which places moral obligation and blame on individuals for their health. This paper explores the ways in which schools draw on such discourses of the body, health and illness in ways which attempt to normalize young women’s bodies. In doing so, we bring together data from two separate research projects; a Finnish study of the social construction of obesity and women’s personal experiences of being ‘fat,’ and an English study exploring young women’s experiences of anorexia and/or bulimia. Whilst much has been written about the social construction of both these conditions they are almost always studied separately. Yet they both share a process of being positioned as ‘marginal’ or ‘pathological’ identities that fall outside of the ‘normal’ ‘healthy’ body ideal within western culture, and which are in need of ‘restoration.’ Both studies revealed school to be a central place where girls learn the boundaries of the acceptable or ideal female body in relation to weight and health. Keywords: schools, health, gender, normalization, obesity, eating disorders 1.
Introduction I was bullied for being fat and then bullied for being thin. I don’t get it, how does that work? (Mia)
In this chapter data from two separate studies in Finland and England are drawn upon to explore the ways in which schools, in making use of dominant discourses of health, may be instrumental in regulating body types that fall outside of a particular body weight ideal. The study conducted in Finland involved an exploration of the social construction of obesity and women’s personal experiences of being ‘fat.’ The second study, conducted separately in England, explored the schooling of experiences of young women who had anorexia and/or bulimia. Our interest in bringing together these two separate sets of data was to attempt to explore how both extreme thinness and ‘fatness’ share a process of being positioned as marginal or pathological identities that fall outside of the ‘normal,’ ‘healthy’ body ideal within western culture.
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Both studies explored the ways in which formal and informal systems of schooling help to define, regulate and publicly monitor the health and bodies of the young women we interviewed. It seems important to turn our attention to the role school plays in the social construction of health, since health relevant behaviours are far too often studied in isolation from the social contexts in which they are embedded and given meaning. 1 Moreover, a significant part of learning about the boundaries of the acceptable shape and size of a woman’s body is embedded in the organisation of everyday life and takes place in most everyday settings such as school. 2 In this sense, it seems we need a greater understanding of the ways in which ‘health,’ ‘illness’ and the ‘body’ are socially constructed, legitimised or marginalized in various social contexts 3 and institutions, and the bearing this has on the subjectivities of those who experience such conditions. Secondly, schools are sites replete with messages about the body and health, since they have in recent years been targeted as intervention points through which to challenge the current so-called ‘obesity epidemic.’ We claim that whilst there are obvious merits to encouraging the prevention of chronic illness, wider discourses of health may be granting teachers an ‘authoritative gaze’ over the students’ bodies, giving legitimacy to the public surveillance and commentary of size, shape and body type which may ironically have a very negative bearing on the well being of young people. 2.
Methods, Data, Analysis
The British data draws on semi-structured interviews conducted with twelve young women diagnosed with anorexia and/or bulimia who were resident at a leading centre in the UK for the treatment of eating disorders. The centre caters for both males and females between the ages of 11-18. The interviews formed part of a wider ethnographic project exploring the relationship between education and the aetiology of eating disorders. 4 The young women whose voices are heard in this paper are aged between fourteen and seventeen, come from ‘middle class families,’ and all have attended what might be described as ‘high status’ comprehensive, grammar, or private, secondary schools. All the study participants are judged by the clinic to be at different stages of ‘illness’ or recovery, but each is suffering in sufficient severity to warrant residential treatment and care. The Finnish data used in this paper was collected for a doctoral dissertation that explores Finnish women’s experiences of being ‘fat.’ The data consists of thirty-five autobiographical writings and twelve semi-structured thematic interviews with Finnish women aged between twenty one and sixty five years. Altogether, this data set consists of fortyseven accounts of life as a fat woman. The data were collected during the spring of 2000 by placing a research request in one Finnish newspaper and one weekly published women’s magazine. In the request, women ‘who
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have experience of being fat’ were asked to write about their experiences or to take part in an interview. Women interested in participating were asked to recall both the positive and negative experiences. The informants’ approach to the subject was expected to be based on lived and personal experience. All of the women who responded either currently identified with being fat or had been fat at some stage of their life. Written data was most often in a form that could be named as a “weight history” or “weight autobiography.” Women typically constructed stories about their lives in chronological order from childhood to the present. Both studies explored the various discourses that informed the participants’ stories. In this paper, we bring both sets of data together and draw upon what might loosely be termed a feminist post-structuralist form of analysis. The analysis explores the interrelationships between discourse and the subject positions made available to, and by, the women in our studies. From a post-structuralist perspective, “subjectivity is formulated through discourses, given substance and pattern through storyline and deployed in social interaction.” 5 In this sense, people move through multiple positioning during various interactions. Positions are discursively and interactively constituted and so are open to shifts and changes as the discourse shifts or as one’s positioning within, or in relation to, that discourse shifts. Through taking up these discourses as one’s own, each woman is a speaking subject and also one who is subjected or determined by those discourses. 6 Thus the concept of ‘positioning’ is an important one for understanding the ways in which people are constituted in and through existing discourses 7 related to health. 3.
School as a Disciplinary Institution
We were particularly interested here in the ways in which schools, as disciplinary institutions, 8 drew on health discourses and various normalising techniques in the social construction of young women’s bodies. According to Foucault, attempts to mould the subject are central to the practices and orders of all disciplinary institutions. Further, control and regulation of the body are often instrumental in these attempts. One of the most significant characteristics of disciplinary power lies in its attempt to define and create normality. School is an example of an institution where bodies are classified as ‘normal’ or ‘abnormal.’ A normalizing structure or order such as school seeks and marginalizes abnormalities, anomalies, and deviance. Foucault claims that as a disciplinary institution school has the purpose to create subjects who conform to standards of normality concerning, for example, health, behaviour, docility and so on. 9 The practice of establishing such standards and defining normality is also a system of grading people. Individuals are categorized and those deemed not normal according to the dominant discourse are placed under surveillance and monitoring in order to become controlled. School as a disciplinary
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environment actively produces and maintains the normative body weight or size. Too much or too little weight is identified as a deviance and children’s bodies become targets of practices that aim to correct or normalize them. Disciplining of the body is a gradual process; little by little, posture, movements, shape and size of the body are put under control. 10 For Foucault, the purpose of such disciplinary institutions is to create ‘docile bodies’ which may be subjected, used, transformed and improved. 11 Disciplining the body in this way might be achieved, for example through spatial organisation and control of the body. As Lois McNay among others has observed, Foucault does not talk about the female body or the gendered character and objectives of disciplinary techniques in his work. 12 However, the role of school in the construction of gender and gendered bodies is not insignificant. There is evidence that school effectually maintains and produces the dominant gender system through its practices and orders. 13 Frigga Haug and her research group have demonstrated that female and male bodies are being shaped and controlled in different ways in school, and have shown how school quite inevitably plays a central role in girls’ socialization process into womanhood. 14 4.
Weight = Health = Public Property! The Authoritative Gaze
The role of schooling in shaping the bodies of young people has increased in recent years, following concerns in Western Society over the status of our health, and the vulnerability of our bodies to ‘chronic diseases.’ 15 In particular, much is being made of the widely reported worldwide ‘rising tide of obesity’ which has been described as an ‘epidemic.’ 16 In recent years however, a number of researchers have looked critically at the scientific research on obesity and suggest that many of its claims are exaggerated, unfounded and replete with untested assertions, and creating a moral panic about the state of our children’s health. 17 In the UK for example, the House of Commons health select committee produced a report in May 2004 on the growing problems of obesity. The report draws upon the death of an overweight three year old girl as a way of illustrating the extent of the obesity epidemic. It was later revealed, however, that the child had suffered a genetic defect linked to excessive weight gain 18 but by that time the popular press was filled with stories that suggested the child had been overfed and thereby the victim of bad parenting. Sheila McKenzie, the doctor who told the Commons health select committee of the child’s death, was a specialist in children’s breathing problems and not an expert in obesity. She had written to the committee a year before the report was published worried about the number of children who she was treating for sleep apnoea. 19 McKenzie was reported as concerned by the prominent use of the case in both the report and the media. 20 The idea that this young girl could have been the victim of over-
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eating and inactivity at such a young age, meant that the Commons Report became front page news in the British popular press, fuelling national health scares about the health of young people and the spread of an obesity epidemic to such extreme ends of the population. Typical headlines included the following: “One foot in the grave – Fat Brits told exercise or die” (The Sun, 30 April 2004); “Obesity kills girl aged 3” (Daily Mail, 27 May 2004); “Fat and Dead … at 3” (The Sun); “Child dies from being fat: The terrifying truth behind Britain’s Obesity Epidemic” (The Express); “Now Obesity kills child aged three” (The Telegraph, 27 May 2004). Morbid obesity is of course, a serious issue. However, the example above is a good illustration of the shortcomings of the obesity discourse when it reduces the relationship between obesity and health to a matter of weight or size, without considering the ways in which it is more complexly mediated by other conditions. As Paul Campos suggests, much of the obesity discourse rests on the assertion that there is correlation between being overweight and ill-health and that losing weight will cure associated ‘disease.’ 21 Campos goes on to suggest that whilst various studies show a relation between weight and ill-health, that relationship is far more complicated than is suggested. Despite its failure to address these ambiguities and complexities, the obesity discourse has been instrumental in constructing the argument that the prevention of obesity ‘should be amongst the highest priorities in public health.’ 22 Schools are now considered by many ‘experts’ to be one of the key sites in which increasing obesity rates can be addressed. 23 However, the very obesity discourses that are embraced by schools, and particularly physical education, may ironically be helping to produce anxieties about the body that can result in ‘unhealthy’ eating and exercise practices. 24 In particular, evidence is emerging that in addressing the so called ‘obesity epidemic’ teachers and policymakers are drawing on a discourse of ‘healthism,’ wherein individuals are deemed largely responsible for their own health and for ‘making healthy choices.’ Being responsible, taking control or other strategies are not, some would say, bad things by definition. What makes ‘healthism’ problematic is that the apportioned responsibility and control only goes so far – it does not extend to being able to make choices over how to behave; for example, over what food is consumed or what level of activity is optimal. Healthism apportions responsibility without power; it offers control but not the authority to determine how responsibility can be expressed. The individual is offered control over the ‘relationship’ which she or he is to enjoy with his or her body, but not over the content of that relationship. The data presented in this chapter explores how this discourse is taken up in schools in the process of regulating young people’s bodies.
182 5.
‘Normal Gone Bad’ Monitoring and Surveillance
Healthism is yet another discourse to grant legitimacy to the surveillance of children’s bodies within the school context. In nearly all of the participants’ stories there was regular reference to their bodies being publicly monitored and scrutinized within the context of schooling. In the Finnish data the majority of the women who had been fat as a child (29 out of 47) named school as the place where they had learnt that their bodies did not conform to the normative body ideal and were somehow unacceptable. There were three specific situations that were frequently referred to in the Finnish data: encounters with the school health care system, physical education classes, and peer group interaction, especially during the breaks. Participants from both studies alluded to the presence of narrow perceptions of health as a corporeal condition, as an achieved outcome of eating the ‘right foods,’ ‘exercising’ and achieving the ‘right size’ that had emerged from, or at least been reinforced and endorsed, in schools. She [the teacher] picked out this girl who was literally like this thick [pointing to a pole in the room] and she said ‘now this looks like a girl who is the right weight.’ That really upset me because I just thought I have to get [my weight] down quick, so yeah that probably had a big effect on me. (Lydia) Such accounts are evidence of the ways in which bodies are regulated in these contexts and subject to surveillance and the gaze of peers, teachers and significant others in the social systems of the school. Many of the women in the Finnish data had become targets of a number of normalizing orders and practices at school. Their bodies have been defined as something that should be corrected and acted upon. Much of this regulation was framed in a language of ‘risk.’ As others are pointing out, much of the wider health agenda now draws on epidemiology connecting unhealthy lifestyle to the most common diseases. 25 In this sense, as John Evans notes, the ‘obesity epidemic’ is one of many health risk scares which have shifted a health approach from therapeutic measures to intervention, such as getting people to change their diet or to increase physical activity. 26 Whilst there are a variety of health discourses taken up in schools, recent work in this area by John Evans, Emma Rich and Rachel Holroyd suggest that in one way or another they all tend to focus on the body as imperfect (through circumstances of ones class and poverty, or self neglect), unfinished and to be ameliorated through physical therapy (circuit training, fitness through sport and a better diet), threatened (by the risks of modernity/lifestyles of food, over eating, inactivity) and, therefore, in need of care and being changed. 27 Following work by Michael Gard and Jan Wright, 28 we are reminded here of Ulrich Beck’s notion of a risk society. 29 In his view, we
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live in a postmodern world characterised by risk, in which governments look to ‘experts’ to provide the knowledge, expertise and scientific certainties to control that which (to the population at large) seems out of control. The language of risk, not only suggests that intervention may be needed to regulate the body, but it also imparts notions of what is right and wrong, good or bad. Many of the young women with anorexia spoke of learning about ‘good’ and ‘bad’ foods within school through, for example Personal, social and health (PSHE) lesson. Lauren, for example, commented that you just learn that some things are good for you and some things are bad and should be avoided. That’s why I find it so hard here when they put a pasty in front of you because I just think ‘fat.’ You don’t learn that there are other things in ‘bad’ foods that are also good for you, like protein and carbohydrates. (Lauren) Carrie commented that she “honestly thought” that she “was just being healthy by cutting out fats entirely” and noted that this was how her “eating disorder started”: Another thing I think is really important is the use of food as a reward or punishment. People don’t talk about it much, but especially in schools food is often used as a reward or treat and it’s just not very helpful. It just creates negative relationships with food, because you think I don’t deserve that food, I shouldn’t eat it. (Carrie) Those young people engaging in what are seen to therefore be ‘risk-taking’ activities – eating fat, sugar and salt, and avoiding too much exercise – are left with a great deal of moral baggage. The young women interviewed in both studies spoke of developing very negative relationships with food based on fear and guilt. The responsibilities placed on the individual to accept correct diet and involvement in physical activity emerge here as moral as well as corporeal obligations. The message these young women hear is that they are to take control of their health by making ‘healthy choices,’ particularly in relation to diet, where schools were teaching them what was ‘good’ (i.e., fruit and vegetables) and ‘bad’ (i.e., fat). As Lydia commented “You see fat and sugar and that’s bad.” In this sense, risk is not simply related to being healthy, but imparts moral characteristics about the choices that these young women make. Being overweight comes to be associated with making bad choices or of lacking control. The corollary of this is that ‘healthy choices’ become associated with control, virtue and goodness, and are taken to be found in the process of becoming thin. Of concern is the way in which this discourse reduces health to a weight issue, and grants the authority to publicly monitor, and
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often humiliate those who are considered ‘at risk.’ Moreover, as will be revealed, there are few places for the (‘abnormal’) body to hide, or avoid this surveillance. Consider for example that many of the women have believed and internalized the thought of being fat and lived with that notion, although many of them question the label as adults. Many feel that the consequences of labelling have been harder to deal with than the actual weight. From old photos I can tell that I was just like everybody else when I went to middle school, not exactly thin, but not fat either ... But I have never felt thin, on the contrary. Having been labelled fat as a child has left its mark. (Woman, 25 years) It is clear that the pursuit of the normative body ideal in school, although aimed at improving health, may also have unintended and negative effects for individuals. The feelings of ‘otherness,’ not belonging, shame and guilt were common for many women. The attempt to regulate and control the fat body is particularly visible in Finnish women’s stories relating to the practices of school health care. In Finland, children are regularly measured and weighed at school, a practice that began in the early decades of the 20th century and which has been justified by the need to follow the physical development of children and prevent possible medical problems, such as obesity. The goal has been to detect any deviation from normal development. However, it should be understood more acutely that these practices are neither politically neutral nor innocent. 30 Many women in the Finnish data mention school weighing as a traumatic and stigmatising experience. In the most severe cases, weighing was conducted publicly in front of the whole class. Private knowledge of the body is, in a sense, made public, the body is made an object of public policy and it is thus placed under the criticism and judgement of others. Participants recounted this experience: Weighing day was such a terrible shock. We were weighed in front of the class and everyone’s weight was pronounced in a loud voice so that everyone could hear it. I was bullied extremely badly that day. (Woman, 57 years) As a child I was really reluctant to tell anyone my weight and the yearly weighings were a nightmare, or not the weighing itself, but the manner of it. We were weighed first and then we had to memorize our weight and finally when everyone had been weighed the teacher called us up and in turn we had to say the weight out loud in front of the whole class. (Woman, 32 years)
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Many of the participating women had been bullied at school, some of them for years because of their size, and weighing had exacerbated this. Children may be particularly vulnerable to this form of discrimination, especially if it seems that the institution itself gives the permission, or at least the means to do it by its own practices. Forms of bullying mentioned in the data included name-calling, ridicule, social exclusion, discrimination and sometimes physical violence. Sometimes even teachers had participated in the bullying for example by calling children insulting names or commenting on their eating habits. Others have pointed towards the ways in which healthism grants the permission to intervene and ridicule people on the basis of body shape. 31 For many women, the school nurse or doctor was the first one to comment on the weight. In an attempt to normalize their bodies, and perhaps to make them conform to the normative body ideal, girls as young as seven years old were put on a low energy diet. Their weight had been regularly monitored and efforts were made to control their eating and exercise habits. The experience has been mostly unpleasant and the health care personnel had oftentimes treated girls in an extremely insensitive and disrespectful manner. Two women tell about their encounters with school health care as follows. My weight became an issue for the first time when I was ten years old, and I am still hurt by the way it was done. The school nurse sent me to a paediatrician who put me on a 1000 calorie diet. I had to go to the nurse to be weighed regularly. I felt that all of a sudden everyone was monitoring what I ate or did not eat; parents, school nurse, teacher, relatives and acquaintances. For a while I was able to lose weight, but going to the weighings was hard for me and I always tried to go there in secret so that my friends would not notice anything. I felt that the school nurse did not only weigh my body but my worth as a human being as well. (Woman 24 years old) When I was in sixth grade [twelve years old] a male doctor [in school] told me in a very rude way that I was too fat and that I should get rid of the flab. Until that time I had only gotten positive feedback from grown-ups. I was very mature for my age and did extremely well in school. The criticism that focused on my body was humiliating to a pre-pubescent girl and I was ashamed of myself. I left the doctor’s room crying and I still cried in class. My teacher took me out of the class and tried to comfort me and make up for the doctor’s hurtful words. I got obsessed with my weight. I became practically glued to the mirror, began to count calories and I lost fourteen kilograms by the next year. I was very thin. Since then I have gained and lost tens of kilograms over the years. At the moment I weigh exactly the same as at the time I was first told
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The women who had been made to go on a diet as children say that at the time they associated it with being somehow deficient as individuals. Such practices have very damaging and enduring impacts on a child’s sense of self. This was particularly the case for younger children, where they could not see the connections between their weight and health at that age. Known health consequences relating to obesity such as cardiovascular diseases, hypertension and Type 2 diabetes are most likely to be too abstract for a child to comprehend. Instead, the experience for many was that they were criticized and judged because their bodies were different and they were somehow ‘bad’ or unacceptable the way they were. Our concern here is not simply with the stigmatisation of ‘fat.’ Instead, by combining our data sets it was revealed that for both those girls who were considered overweight and those who were underweight, schools often reduced health to a matter of weight loss or gain against a normative ideal. This form of biomedical discourse tends therefore to focus only on the ‘physical’ dimensions of health and illness, by “presupposing that any underlying pathology can be linked to a physical sign.” 32 Biomedical discourse in this sense produces a language through which illness is deemed to be ‘recognizable.’ Such monitoring of health via ‘physical signs’ is not peculiar to the overweight child. This also has a bearing on how teachers come to make sense of any body type that falls outside the norm or which is perceived as ‘disorderly.’ The bodies of the girls with anorexia were also ‘read’ in similar ways: One of my teachers came up to me and said ‘oh how have things been’ and I said ‘Oh not too well, I think they’re thinking of putting me back in a unit’ and he goes ‘well you don’t look too thin,’ and I was like (sighs) ‘but you don’t understand, there is more to it than just being thin.’ … And also when I came back to the sixth form, the same teacher saw me in a corridor and the first thing he said to me was ‘are you putting on weight.’ He shouted it across the whole corridor. He saw me and it obviously triggered in his head ‘oh weight issue, are you putting on weight?’ and I was like ‘Oh my God!’ (Lauren) In this, and other accounts, the focus of understanding anorexia rests not upon the thinking and relationships that these young people have with food,
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self and the body, but with the biomedical issue of weight loss and weight gain. Hayley recalls being publicly examined in similar ways: One time a teacher had made a comment when I was in the lunch queue at school. She said ‘well Hayley, is this really you in a queue for food?’ It was awful. I mean, especially there in front of all those people. (Hayley) This case, albeit extreme, represents the sentiments expressed towards not only health problems but also directed at variance in body types beyond the normative ideal. To teachers these may be innocent comments, perhaps expressed with the best interests of the child in mind, particularly when constructed through a biomedical discourse, which assumes a link between someone’s size/weight and their health. However, for the young women we interviewed, these emerge as life changing exchanges. The traces of these experiences still linger with many of the participants we interviewed and provided the means for self-surveillance. The allegiance here is towards the body as biomedically constructed, one which should be publicly monitored and ‘repaired’ when it falls outside the norm. However, and this is one of our key concerns about all of the above, this is a perspective which tends to gloss over the complex social dimensions of relationships with eating, food, weight and the social construction of ‘fat.’ Such practices may, ironically, do more harm than good to a child’s health when we consider the broader issues of well-being. 6.
Health Related Support
Reducing health to a weight issue has implications not only for the subjectivities of these young women, but also for the ways in which schools may intervene or support young people with weight-related health problems. When teachers drew on discourses of healthism, it tended to deflect attention away from efforts to understand the social and emotional dimension of what it is like to be a young woman suffering from an eating disorder or experiencing the stigma of being ‘overweight.’ Such a direct focus on weight and health overlooks the fact that many young women, who appear to be at ‘normal’ weight could still be struggling with the dayto-day problems of anorexia, including the ways in which they may experience their bodies and bodily processes as ‘unworthy’ with regard to any pleasurable relationship with foods: Although my friends were aware that I was anorexic, they didn’t always appreciate that I also had a problem … they [the school] didn’t seem to understand just how much was going on in my head, they thought, I don’t know, that I was being stupid or trying to get attention or something. (Carrie)
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Nearly all the girls with anorexia suggested that when those in school focused on their eating disorder in this way, it tended to pathologise their eating disorder: People don’t often realise what extreme pain and agony it is, they just think, it’s like a glamorisation of getting attention and things like that. Which is not true. (Mia) It thus becomes difficult for teachers and peers to give social support to these young women, and to begin to understand their condition: All I can do is try and talk to them (parents and teachers) about it, but you know [they say] ‘the issue is here Lydia, you know you’ve got to get better’ and I’m like ‘shut up.’ And you know they don’t really want to know what I think, because they’re like ‘why can’t you eat?’ and I’m like ‘why can’t you understand?’… It’s really really frustrating … (Lydia) Ultimately, this has implications for how schools support young people who are experiencing weight related problems. Carrie, a young woman suffering from anorexia, for example, believed that there was a need to “educate people more, because schools don’t have a clue about what it’s [anorexia] all about” and that “teachers and schools could often appear to be judgemental in their attitudes to students with illnesses such as anorexia.” Another participant commented that her teacher appeared to “place some of the blame for her eating disorder on the fact that she came from a single parent family.” She felt that “the ‘attitude’ of the school to students who weren’t from ‘traditional’ families was unhelpful and insulting.” These eating disorders come to be viewed, as they are in the mainstream press and popular media, “as pathological conditions distinctly different from the ‘normal’ and ‘healthy’ experiences and practices of nonanorexic women and girls.” 33 At best this may lead to ineffective understandings and solutions to offer support, and at worst may result in social inequalities leading to what Carol Ronai and Gina Cordell have referred to as “discursive constraint” 34 wherein these young women’s “behaviour is constrained by the threat of having a negative category applied to ... her self.” Indeed, many of the girls with anorexia suggested there were very few teachers or peers in schools who made efforts to look beyond the need to ‘eat normally’ and as such they were often positioned as ‘irrational.’ Just as many of the women who identified as ‘fat’ were bullied, so too were those girls with anorexia. Karen commented that “They [teachers] could have told people about it, and informed them about what it meant … because I used to get bullied for being anorexic.” Similarly, Carrie suggested that “I think that if someone doesn’t like you and they want to pick on you at school then weight is the thing that they will go for.” Many of the
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girls suggested that such experiences contributed to the onset of depression and/or self harm, and in this sense, are alarming manifestations of this narrow focus on body ideals. Therefore, extreme weight loss or weight gain comes to be defined as a negative social position through which to define the self, implicitly working to persuade someone to return to ‘normal, healthy’ weight. It literally constrains the discourse that these young women can apply to their self 35 reducing the available subjectivities to positions of irrationality or other pathologising stereotypes such as deviance or lacking control. These sorts of evaluations are important since the perception of stigmatisation is clearly influential in shaping attitudes about the self. In this sense, these young women came to be viewed by their peers as ‘different’ or ‘deviant.’ to their peers. This is compounded when such ‘deviance’ is made sense of through a medicalised discourse or biomedical model which views the body as a series of separate but independent parts. 36 Constructed in this way, “it is always individuals who become sick, rather than the social, economic or environmental factors to cause them to do so.” 37 7.
Conclusion
It would be tempting to make conclusions here about the insensitivity of significant members of school systems and the ways in which they approach ‘weight problems’ of young people. However, much of what teachers and health care professionals say and do in schools is motivated by the belief that it is for the ‘well-being’ of the child. The accounts of the young women suggest that health discourses are so deeply embedded in the culture of schooling that even well intended commentary can linger negatively in the minds of those it is aimed towards. School emerges here as an institution teaching the boundaries of the normative body ideal. Frequently schools are uncritically considered to be an intervention point to improve a nation’s health, but as can be seen in the stories of the young women in our studies, schools are also transmitters of social inequality through the construction of ‘health.’ In the schools of all our respondents, little or no consideration was given to the power of emotion in influencing eating behaviours, of comfort food, of pleasure food, or of desirable food. 38 Much of the above moves us to consider ways in which teachers may begin to learn and think about the body and health in different ways and raises a number of questions about the role of schools in the construction of health. Questions which include the role of health and physical education in addressing eating disorders or the ways in which social stigma is attached to notions of ‘fatness.’ How can teachers begin to address these social inequalities when schools are being so heavily targeted as a vehicle through which to tackle obesity? The role of teachers in the prevention of negative relationships with the self, the body and eating
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clearly remains a crucial area for research, public debate and perhaps even intervention.
Notes 1
Kathryn Backett-Milburn, “Parents, Children and the Construction of the Healthy Body in Middle-Class Families.” In The Body, Childhood and Society, edited by Alan Prout, (Palgrave Macmillan, 2000), 79-100. 2 Ulla Kosonen, (1998) Koulumuistoja naiseksi kasvamisesta. (Jyväskylä, 1999). Nancy Sophi Lesko, “The Curriculum of the Body. Lessons from Catholic High School” in Becoming Feminine. The Politics of Popular Culture, ed. Leslie Roman, Linda K Christian—Smith and Elizabeth Ellsworth (Basingstock: The Falmer Press, 1988. Tarja Tolonen, (2001) Ääni, tila ja sukupuolten arkiset järjestykset (Helsinki, Gaudeamus, 2001). 3 As argued by Jeffery Sobal and Donna Maurer, “The Social Management of Fatness and Thinness,” in Interpreting Weight: The Social Management of Fatness and Thinness, ed. Jeffery Sobal and Donna Maurer, (New York: Aldine De Gruyter, 1999) 3-28. 4 See Emma Rich, Rachel Holroyd, and John Evans, “Hungry to Be Noticed: Young Women, Anorexia and Schooling,” in Body, Knowledge and Control, ed. John Evans, Brian Davies and Jan Wright (London: Routledge, 2004). 5 Bronwyn Davies, and Chris Banks, “The Gender Trap: A Feminist Poststructuralist Analysis of Primary School Children's Talk About Gender.” Journal of Curriculum Studies 24, 1 (1992), 1-25. 6 Bronwyn Davies, Life in the Classroom and Playground: The Accounts of Primary School Children (London: Routledge and Kegan Paul, 1982). 7 Bronwyn Davies and Rom Harre, “Positioning: The Discursive Production of Selves.” Journal for the Theory of Social Behaviour 20 (1990): 43-64. 8 Michel Foucault, Tarkkailla ja rangaista [Discipline and Punish]. Finnish translation by Eevi Nivanka (Keuruu: Otava, 1980). 9 Ibid. 10 Ibid, 156-157. 11 Michel Foucault, quoted in Paul Rabinow, The Foucault Reader. An Introduction to Foucault’s Thought. (London: Penguin Books, 1991), 180182. 12 Lois McNay, Foucault and Feminism: Power, Gender and the Self (London: Polity Press, 1992), 11 and 32. 13 See Nancy Lesko 1988 and Ulla Kosonen 1998. 14 Frigga Haug, et al., Female Sexualization. A Collective Work of Memory, (London, Verso, 1987 [1983]).
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Alan Petersen and Deborah Lupton. The New Public Health: Health and Self in the Age of Risk (Sydney: Allen and Unwin, 1996). 16 Katherine M. Flegal “The Obesity Epidemic in Children and Adults: Current Evidence and Research Issues,” Medicine and Science in Sports and Exercise 31 (1999): S509–S14. 17 John Evans “Physical Education and Health: A Polemic or Let Them Eat Cake!” European Physical Education Review 9, no. 1 (2003): 87-101; Michael Gard and Jan Wright. “Managing Uncertainty: Obesity Discourses and Physical Education in a Risk Society,” Studies in Philosophy and Education 20 (2001): 535-49; Deborah Lupton. Food, the Body and the Self (London: Sage, 1996). 18 The girl was referred to the Cambridge University unit at Addenbrooke’s Hospital, so that they could check whether there was a genetic cause to the child's obesity. Dr Sadaf Farooqi, of Addenbrooke’s, said “It is an incontrovertible fact that a genetic defect was the cause of this child’s problem.” Times Online 10 June 2004. 19 Sleep apnoea is a condition in which the patient stops breathing because of pressure on the windpipe. 20 Guardian Unlimited online, 10 June 2004. 21 Paul Campos The Obesity Myth: Why America’s Obsession with Weight is Hazardous to your health (Gotham Books, 2004). 22 Jacob C. Seidell, J.C “The Current Epidemic of Obesity.” In Physical Activity and Health, ed. Claude Bouchard, (Champaign, IL.: Human Kinetics, 2000), 21-20, 28. 23 This tendency is noted by Michael Gard and Jan Wright (2001). 24 Evans 2003. 25 See John Evans, Emma Rich, and Rachel Holroyd. “Disordered Eating and Disordered Schooling: What Schools Do to Middle Class Girls” British Journal of Sociology of Education 25, no. 2 (2004): 123-42. 26 Evans 2003. 27 Evans, Rich and Holroyd, 2004 28 Gard and Wright, 2001. 29 Ulrich Beck, Risk Society, Sage London, 1992. 30 For example Saara Tuomaala’s work on public health promotion manuals directed at school children in Finland in the 1920s and 1930s, demonstrated how school health care and its policies and practices served nationalistic purposes in Finland. Tuomaala shows that in the light of these guide books the ideal child of school health care has been strong, agile and thin from the early 1920s onward. Social hygienic aspects were linked to the creation of the ideal citizen. Weak, clumsy and fat children were regarded as unfit to represent the nation. In this context, what is perceived as bodily deviance is yet again associated with moral decay. See Saara Tuomaala, “Pois vetelyys ja basillit – vahvista itsenäistä kansakuntaa.
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Koululaisen kuva 1920-30-luvun terveysoppaissa,” in Suomalainen koulu ja kulttuuri, ed Tarja Tolonen, (Tampere: Vastapaino, 1999): 161-179. 31 Gard, 2001: 546. 32 Bryn Austin “Fat, Loathing and Public Health: The Complicity of Science in a Culture of Disordered Eating”. Culture, Medicine and Psychiatry, 23, (1999): 247. 33 Helen Malson The Thin Woman: Feminism, Poststructuralism and the Social Psychology of Anorexia Nervosa (London: Routledge, 1998), x. 34 Carol Rambo Ronai “Discursive Constraint in the Narrated Identities of Childhood Sex Abuse Survivors,” in Everyday Sexism in the Third Millenium, ed Carol Rambo Ronai, Barbara A. Zsembik and Joe R. Feagin, (New York: Routledge, 1997) 123-36. 35 Ibid. 36 Lesley Doyal, What Makes Women Sick: Gender and the Political Economy of Health. (New Brunswick, NJ: Rutgers University Press, 1995). 37 Ibid, 35. 38 See Deborah Lupton, Food, the Body and the Self. (London: Sage, 1996).
Bibliography Austin, Bryn. “Fat, Loathing and Public Health: The Complicity of Science in A Culture of Disordered Eating,” Culture, Medicine and Psychiatry, 23 (1999): 247. Backett-Milburn, Kathryn. “Parents, Children and the Construction of the Healthy Body in Middle-Class Families.” In The Body, Childhood and Society. Ed. Alan Prout, 79-100. Houndsmills: Palgrave Macmillan, 2000. Beck, Ulrich. Risk Society. Sage: London, 1992. Campos, Paul. The Obesity Myth: Why America’s Obsession with Weight is Hazardous to your health. New York: Gotham Books, 2004. Davies, Bronwyn and Chris Banks. “The Gender Trap: A Feminist Poststructuralist Analysis of Primary School Children's Talk About Gender,” Journal of Curriculum Studies 24, 1 (1992): 1-25 Davies, Bronwyn and Rom Harre. “Positioning: The Discursive Production of Selves,” Journal for the Theory of Social Behaviour 20 (1990): 43-64.
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Davies, Bronwyn. Life in the Classroom and Playground: The Accounts of Primary School Children. London: Routledge and Kegan Paul, 1982. Doyal, Lesley. What Makes Women Sick: Gender and the Political Economy of Health. New Brunswick, NJ: Rutgers University Press, 1995. Evans, John, Emma Rich, and Rachel Holroyd. “Disordered Eating and Disordered Schooling: What Schools Do to Middle Class Girls,” British Journal of Sociology of Education 25, 2 (2004): 123-42. Evans, John. “Physical Education and Health: A Polemic or Let Them Eat Cake!” European Physical Education Review 9, 1 (2003): 87-101. Flegal, Katherine M. “The Obesity Epidemic in Children and Adults: Current Evidence and Research Issues,” Medicine and Science in Sports and Exercise, 31 (1999): S509–S14. Foucault, Michel. Tarkkailla ja rangaista [Discipline and Punish]. Finnish translation by Eevi Nivanka. Keuruu: Otava, 1980. Gard, Michael and Jan Wright. “Managing Uncertainty: Obesity Discourses and Physical Education in a Risk Society,” Studies in Philosophy and Education 20 (2001): 535-49. Haug, Frigga, et al. Female Sexualization. A Collective Work of Memory. London: Verso, 1987 [1983]. Kosonen, Ulla. Koulumuistoja naiseksi kasvamisesta. Jyväskylä, 1999. Lesko, Nancy Sophi. “The Curriculum of the Body. Lessons from Catholic High School.” In Becoming Feminine: The Politics of Popular Culture. Ed. Leslie Roman, Linda K Christian-Smith and Elizabeth Ellsworth. Basingstock: The Falmer Press, 1988. Lupton, Deborah. Food, the Body and the Self. London: Sage, 1996. Malson, Helen. The Thin Woman: Feminism, Poststructuralism and the Social Psychology of Anorexia Nervosa. London: Routledge, 1998. McNay, Lois. Foucault and Feminism. Power, Gender and the Self. Cambridge: Polity Press, 1992. Petersen, Alan and Deborah Lupton. The New Public Health: Health and Self in the Age of Risk. Sydney: Allen and Unwin, 1996.
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Rabinow, Paul. The Foucault Reader. An Introduction to Foucault’s Thought. London: Penguin Books, 1991. Rich, Emma, Rachel Holroyd, and John Evans. “Hungry to Be Noticed: Young Women, Anorexia and Schooling.” In Body, Knowledge and Control. Ed. John Evans, Brian Davies and Jan Wright. London: Routledge, 2004. Ronai, Carol Rambo “Discursive Constraint in the Narrated Identities of Childhood Sex Abuse Survivors.” In Everyday Sexism in the Third Millennium. Ed. Carol Rambo Ronai, Barbara A. Zsembik and Joe R. Feagin, 123-36. New York: Routledge, 1997. Seidell, Jacob C. “The Current Epidemic of Obesity.” In Physical Activity and Health. Ed. Claude Bouchard, 210-28. Champaign, IL.: Human Kinetics, 2000. Sobal, Jeffery and Donna Maurer. “The Social Management of Fatness and Thinness.” In Interpreting Weight: The Social Management of Fatness and Thinness. Ed. Jeffery Sobal and Donna Maurer, 3-28. New York: Aldine De Gruyter, 1999. Tolonen, Tarja. Ääni, tila ja sukupuolten arkiset järjestykset. Helsinki: Gaudeamus, 2001. Tuomaala, Saara.”Pois vetelyys ja basillit - vahvista itsenäistä kansakuntaa. Koululaisen kuva 1920-30-luvun terveysoppaissa.” In Suomalainen koulu ja kulttuuri. Ed. Tarja Tolonen, 161-79. Tampere, Vastapaino.
Note on Contributors Dr. Emma Rich is a lecturer in Gender, Identity health and Physical Education in the school of Sport and Exercise Science Loughborough University, England. Hannele Harjunen is preparing a doctoral dissertation on Finnish women’s experiences of being fat at the Department of Social Sciences and Philosophy, University of Jyväskylä, Finland. Professor John Evans is a lecturer in the Sociology of Physical Education in the school of Sport and Exercise Science, Loughborough University, England.
Part 4
Beyond Biomedicine: Ethics, Experience, Voice
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Midwifery, Consumerism, and the Ethics of Informed Choice1 Philippa Spoel Abstract Within Canadian midwifery, the principle of informed choice is intended to support a non-authoritarian, women-centred ethics of health care. However, informed choice likewise functions as a key component of dominant consumerist, neo-liberal ideologies of health care. Examining the midwifery principle of informed choice in the context of this broader framework reveals ethical problems and tensions that challenge midwifery’s philosophy: a consumerist ethics mystifies the social determinants of choice by focusing on the ideal of individual ‘freedom’ of choice; it privileges the unidirectional transmission of (ostensibly) valueneutral biomedical information above other ways of knowing and communicating; and it promotes disengagement between the health professional and the recipient of care. Reconfiguring the midwifery version of informed choice in explicitly feminist ethical and epistemological terms may help to make it less complicit with this dominant framework, and it may provide a starting point for re-thinking the meaning and ethics of informed choice in other areas of health care. Key Words: informed choice; midwifery; health care ethics; consumerism. 1.
Introduction
Since the 1980s, informed choice has emerged as an integral principle of progressive caregiving. Typically, informed choice refers to the rights of health care consumers to be fully informed about testing or treatment options so that they can then make an educated ‘choice’ among those options. This is in contrast to a paternalistic model of caregiving in which the health professional decides for the patient what treatment is in his or her best interests. As Richard Gwyn explains, At one extreme there is paternalism, which assumes that the [health professional] should make decisions on behalf of the patient, based on his or her superior knowledge and experience. … At the other extreme lies informed choice in which the [health professional] lays out the pros and cons of each and every possible course of action without prejudice, and allows the patient to make a choice based on this information. 2
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However, despite the apparent progressiveness of informed choice as a principle of health care, a close look at its ethical implications reveals problematic aspects. In particular, these aspects surface when one considers informed choice as part of the larger neo-liberal, consumerist discourse and ideology of health care within which this principle typically operates. According to Saras Henderson and Alan Petersen, this consumerist discourse has a “complex double-edged character”: on the one hand, it can function as valuable political strategy and language for advancing or reclaiming the rights of citizens to shape and participate in health care; on the other hand, it can be deployed by professional and bureaucratic entities as a way of regulating the lives of individual “consumers,” thus obscuring the need for collective social change and masking the social determinants of health and illness.3 Understanding this tension between the progressive and problematic dimensions of informed choice is, I believe, significant for understanding ethical and epistemological tensions within contemporary health care as a whole, as well as within specific areas of health care, each of which is likely to define and practice informed choice in somewhat different ways. In this paper, I focus on the benefits and challenges of informed choice within the specific area of midwifery health care in Canada, but I do so by situating the midwifery discourse of informed choice within the broader framework of the discourse of consumerism in contemporary Western health care. In particular, I explore the problematics of ‘choice’ as constructed by a neo-liberal ideology of individualism and the limits of a scientific-medico understanding of ‘information.’ This analysis indicates the ethical problems and tensions that challenge midwifery’s women-centred principle of informed choice, and it suggests that re-configuring informed choice in explicitly feminist ethical and epistemological terms may help it to resist co-optation by the dominant ideology of consumerism. 2.
Midwifery in the Canadian Context
Unlike British midwives, Canadian midwives have only recently started to become a regulated health profession integrated within the main, publicly-funded health care system. Currently, five provinces and one territory have legislated midwifery as a self-regulated profession of primary care-givers, governed in each province by its own College or equivalent body.4 Prior to securing regulated status, Canadian midwives operated in legal limbo outside the main health care system, offering maternity care on a fee-for-service basis to a small but vocal group of ‘consumers’ who have played, and who continue to play, a vital role in lobbying governments to grant midwifery legal status within the main system. For pre-regulation midwifery consumers as well as their midwives, preserving midwifery’s alternative, women-centred model of
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care was crucial in the shift from unregulated to regulated profession. As Ontario’s consumer lobby group argued in their 1986 brief to government, Our experience of midwifery leads us to advocate the changes required to integrate midwifery into the health care system … We are concerned, however, that legislation should not compromise the high-quality, alternative care that has developed in Ontario.5 To help ensure that midwifery’s distinctive model of childbirth remains strong despite being incorporated within the main system, the policy documents produced by the new professional Colleges identify informed choice as an integral feature of midwifery care. 3.
Informed Choice in Midwifery
In the context of Canadian midwifery, informed choice has strong significance in two ways: first, it has functioned and continues to function as a key argument in the lobbying efforts by midwives and their supporters to secure legal status for the profession within the public health care system; second, informed choice has become enshrined as a central principle of care-giving within the policy documents that define the newly regulated midwifery model of care.7 In the first instance, midwives and their supporters argue that the government should grant midwifery legal status as a self-regulated health profession because doing so responds to consumer demands for options or choices in maternity care. The Ontario Association of Midwives, for example, began its 1983 brief to the government by arguing that consumer demand for alternative forms of maternity care demonstrated the need for midwives to be included in the health care system, arguing that “[d]ue to consumer demands, midwifery has re-emerged across Canada … Parents are seeking out care-givers who familiarize them with their options and support them in making informed choices appropriate to their own needs.”8 The consumer lobby group, for its part, warned the government that should midwifery not become a self-regulated health profession, “an underground midwifery system that remains responsive to consumer needs would [continue to] develop.”9 The premise that, as consumers, women have the right to make the informed choice to have midwives as their caregivers is fundamental to the midwifery lobby. The persuasiveness of this argument could be understood as emerging from a felicitous congruence between the language and values of the women’s health movement and the official discourse and values of the Canadian health care system as these developed during the 1980s. In her discussion of ideology in the re-emergence of North American midwifery, Beth Rushing notes how the values of the midwifery movement coincide
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with those of the women’s health movement, including an emphasis on women’s individual responsibility for health, a concern with existing structures of health care provision, and a desire to increase the “range of health care possibilities – therapies, types of providers, and styles of practice” available to women.10 This perspective supports a very active role for consumers not only in becoming educated or informed about their health care but also in lobbying for the legalization of midwifery.11 From this point of view, the discourse of consumerism appears to function in progressive, empowering ways: supporters of midwifery strategically assume a cohesive identity as a group of consumer activists working to change the existing structures of health care provision and thus enhance the range of choices available for maternity care.12 The positive response of some provincial governments to this form of consumer/women’s activism is likely due, at least in part, to the cultural prevalence of a consumerist ideology. For example, in Ontario, where the regulation of midwifery occurred under the rubric of a larger review of the whole system of health professions, part of the mandate of this review was to support “the consumer’s right to choose his or her health care provider from an array of safe alternatives.”13 More recently, the Atlantic Centre of Excellence in Women’s Health (a state-funded research centre) hosted a conference on midwifery regulation in which the role of consumers featured as a prominent theme. In these ways, the movement to secure legal status for midwifery in Canada has been and continues to be articulated in terms of the public’s right to make informed choices about health care services. As such, it both draws on and reinforces a rhetoric of consumerism that privileges values such as freedom of choice, individual rights and autonomy, responsiveness to consumer needs and preferences, personal empowerment and responsibility, and consumer participation in changing health care provision. In the post-regulatory context, informed choice has likewise emerged as a central feature of midwifery, though in a different sense. In this context, informed choice does not refer to women’s rights to have midwifery care in the first place; rather, it refers to women’s rights to act as empowered, knowledgeable decision-makers throughout the caregiving process.14 The “Model of Practice” policy documents produced by the professional Colleges describe informed choice as “a decision-making process which relies on a full exchange of information in a non-urgent, non-authoritarian, co-operative setting.” The process of informed choice is based on the midwifery philosophy which states that “Midwifery promotes decision-making as a shared responsibility between the woman, her family (as defined by the woman) and her care-givers. Midwives recognise women as primary decision makers.”15 According to the Model of Practice guidelines, through informed choice, midwives simultaneously demonstrate their respect for women’s rights and their responsiveness to women’s needs.
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The language of these policy documents clearly reveals that, in the Canadian midwifery model of care, informed choice means more than health professionals simply providing patients with information about treatment options; rather, informed choice is supposed to be an empowering, relationship-building process that allows midwives to implement key aspects of their women-centred philosophy of health care. Informed choice means providing women with all the information they need to make responsible decisions about their own health care. Further, the Model of Practice guidelines emphasize the importance not only of the nature of the information but also the way in which it is provided: information is shared and exchanged in a “non-urgent, non-authoritarian, cooperative manner.” Terminology such as this indicates how, within Canadian midwifery, informed choice is intended as a process as well as an outcome – a process that both depends on and develops a relationship of mutual trust and respect between the midwife and the woman. Although the terminology of consumerism does not occur explicitly in most of the provincial guidelines for informed choice, nonetheless the ideology of consumerism should be understood as a significant component of how midwifery envisions informed choice. Indeed, the Alberta “Model of Practice” appeals explicitly to the values of consumerism in its policy on “Informed Consumer Choice,” the phrasing of which is otherwise very similar to other guidelines.16 Just as the values of the women’s/consumer health movement have provided midwifery supporters with a culturally persuasive basis from which to convince provincial governments to legalize the profession, so too do the values of health care consumerism appear to support a progressive, patient-centred, informed choice approach to care-giving. According to Palo Almond, health care consumerism is a progressive ideology that “in theory, … aims … to create a better balance of power between consumers and providers, indicating a move towards less paternalism and more democratic relationships between consumers and providers.”17 From this perspective, the Canadian midwifery version of informed choice would appear to be contributing in significant ways to the dismantling of traditional health care hierarchies and to the creation of more egalitarian relationships that support patient empowerment and freedom of choice. 4.
Critical Perspectives on Informed Choice and Health Care Consumerism
However, despite the progressive aspects noted above, the ideology of consumerism with which the midwifery value of informed choice is associated also possesses problematic dimensions. Recent critiques of neoliberal ideology in health care as well as feminist critiques of biomedical ethical assumptions about ‘rational’ individualism and reflections on the limits of ‘choice’ as an argument in the women’s health movement pro-
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vide important perspectives for questioning the meaning and ethics of informed (consumer) choice in midwifery and other domains of health care. As Deborah Lupton explains, the “double-edged” nature of the discourse of consumerism means that it can be deployed both by advocacy groups who draw on the principles of liberal humanism in their efforts to achieve equitable access to health care and by public policy makers working from a free market model to reform health care. But Lupton’s critique of consumerism goes beyond identifying what simplistically might be called the ‘good’ advocacy model versus the ‘bad’ free-market model. For her, a fundamental problem with consumerism in all its versions lies in the assumptions that it makes about the kind of person the health care consumer is supposed to be. As she explains, “the dominant and privileged representation is that of the dispassionate, thinking, calculating subject,” a non-differentiated identity that ignores “how gender, sexual identity, age, ethnicity, social class and personal biography or life experience affect the taking up of [the] ‘consumerist’ . . . position.”18 Ian Shaw and Alan Aldridge likewise critique the consumerist ideology that characterizes the “New Public Health” and the growing phenomenon of “healthism.” This framework presumes that individual “consumers … need access to objective information on which to base a rational choice of goods and services.” However, a negative ethical consequence of this approach is that people who ‘choose’ not to regulate their behaviour according to the normative health ‘information’ that they receive can be blamed for their ‘failure’: in effect, they become “failed consumers.” By encouraging consumers to be responsible for their own bodies and health, this ideology of health care draws attention away from the structural inequalities of society that contribute to health problems, and it replaces collective rights to welfare with individual obligations.19 Henderson and Petersen concur that this changing conception of the subject of health care coincides with a shift from a “welfarist” to “neoliberal” politics of health care. In the neo-liberal model, consumers of health services are conceived as independent, active, informed, and rational decision-makers. As a result, consumerism is often presented in terms of “personal empowerment” and “freedom of choice.” However, Henderson and Petersen caution that this rhetoric of “choice” and the “right to know” obscures the social compulsions that surround the exercise of choice and the extent to which options for action are pre-defined and limited.20 Similarly, feminist ethicists critique the concepts of autonomy, rationality, and freedom of choice that inform mainstream bioethical and consumerist assumptions about the subject of health care and the nature of informed choice. According to Susan Sherwin, the principle of respect for patient autonomy is typically understood as “recognition that patients have the authority to make decisions about their own health care.” However, she argues that the language of autonomy “is often used to hide the workings of privilege and to mask the barriers of oppression.” Further, this
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individualistic ethical framework may foster an “illusion of choice” that supports new medico-political mechanisms for regulating behaviour. As she explains, “efforts to guarantee the exercise of individual informed choice may actually make the exercise of medical authority even more powerful and effective than it would have been under more traditionally paternalistic models.” For Sherwin, a feminist ethics of health care must actively resist and redefine, rather than complacently accept, dominant bioethical assumptions about individual “choice” and “autonomy.”21 Because of its problematic ethical dimensions within mainstream bioethics and the politics of neo-liberal health care, the ideal of ‘choice’ has also become problematic for the women’s health care movement. Abby Lippman, for example, questions the appropriateness of a consumerist discourse of informed choice for a women-centred, feminist ethics of health care, even though ‘choice’ has traditionally figured as a central ideal in the women’s health movement. She notes how this discourse “encourages and reflects an atomised, individualised view of social life, a society in which private citizens are presumed to act alone and only in their best interests.” Framing choice in terms of individual consumers ignores how women’s lives are fabricated through intricate, inter-dependent social webs. Further, the kind of individualism fostered by the ideology of consumer choice “hides the social conditions that produce ill health” and it masks “the operations of power that construct choices.”22 Commenting on the role of the ‘choice’ ideal in the abortion rights movement, feminist activist Judy Rebick notes how, in the early years of the movement, the “pro-choice” argument was highly successful because “freedom of choice is such a strong value in liberal democratic society.” However, as she notes, “the idea that individual choice is the most important social value is not particularly feminist. In fact, in a society of unequal power, an emphasis on individual choice alone usually gives those with power the only real choices.”23 Lippman and Rebick’s critical reflections on ‘choice’ as a motivating ideal for the women’s health movement raise questions about the value and appropriateness of this ideal for a midwifery ethics of care. 5.
The Nature and Process of Informing
By focusing on the current neo-liberal, consumerist discourse of health care, the above discussion highlights potentially negative ethical dimensions of choice in relation to the principle of informed choice. In addition, however, the nature and process of informing implied by the principle of informed choice should be examined. Such an examination raises epistemological questions about the kinds of knowledge privileged within the informed choice model as well as the nature of the communication process involved. Ultimately, it raises questions about the nature and ethics of the relationship between caregiver and care-receiver.
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As Mary Dixon-Woods has shown, most patient information leaflets developed to support the principle of informed choice tend to privilege biomedical over other forms of information or knowledge. This poses a potential constraint on “the patient empowerment process” because “in cases of conflict between bio-medical and ‘lay’ knowledges … ‘information for choice’ might better be replaced with the more honest ‘information for compliance.”24 Sherwin similarly points out that the information provided to patients inevitably reflects what is considered valid and relevant by the dominant health care structure, rather than what necessarily concerns patients the most. As a result, a significant gap may exist between what health care practitioners think patients should know and what patients themselves “need” to know.25 In addition, the means and process of providing information must also be considered. The assumption that printed leaflets, information packages, or other essentially static, precomposed units of information are the best – and sometimes the only – means for facilitating the informed choice process is very reductive. Conveying information in this way presupposes that the communication process is (or should be) non-interactive and uni-directional or, at the very least, that the role of patients in this process is principally to ask questions based on pre-defined units of information, rather than to share their own knowledge and experiences with caregivers in an ongoing, interactive process of exchange. The question of what model of communication the principle of informed choice presupposes links back to issues of patient ‘autonomy’ and ‘freedom of choice.’ In the field of genetic counselling, for example, which has rejected medical paternalism in favour of a “consumer-choice” model, the value of “non-directiveness” is integral to the model of informed choice that counsellors are expected to practice.26 Petersen points out how non-directiveness intersects with other values such as autonomy, empowerment, right to know, and freedom of choice.27 However, despite its endorsement by professional bodies in the field of genetics, the value of non-directiveness has troubling implications for the informed choice process. On one level, non-directiveness can be critiqued because, in practice, it does not appear feasible. Several studies have demonstrated that, even though counsellors may believe in the value of non-directiveness, in practice their consultations with clients range from being overtly to covertly prescriptive.28 For example, counsellors inevitably influence clients’ ostensibly ‘autonomous’ decision-making through the selection and framing of the information that they provide. In addition, clients frequently want and request the counsellor’s advice in choosing what course of action to take. On a more macro-level, non-directiveness is not in reality feasible because structural and social factors shape the kinds of information and choices available to clients and to counsellors. For instance, as Josephine Green and Helen Statham point out in their study of
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consultations concerning pre-natal screening, not only does the offer of any test carry with it the message that the test is worth having, but the very existence of tests creates pressure to use the technology.29 More importantly, however, the value of non-directiveness in the context of informed choice privileges a misleading conception of knowledge and a reductive view of the care-giving relationship. In the first instance, non-directiveness presupposes that information or knowledge exists in some kind of objective, unbiased, value-free form separate from the situated motives, values, and predispositions of its creators and users. The principle of non-directiveness, argues Petersen, reflects a scientistic ethos that reinforces medico-scientific definitions and power relations. This framework obfuscates the inevitable selectivity and value-ladenness of the information that counsellors present, as well as the influence of the broader social context and politics on the process of informed choice. Ultimately, Petersen warns, the language of non-directiveness and valueneutrality may function as a “smokescreen” that conceals “the expansion of new, insidious forms of control” played out in the name of informed choice.30 In addition, a “non-directive” model of informed choice fosters a professional ethos of disengagement and scientific neutrality that may negatively affect the care-giving relationship. According to Clare Williams et al., “attempting to give scientific facts and medical knowledge in a valueneutral way can undermine the possibility of encouraging open communication” and of developing “caring human relationships” between counsellor and client.31 This view coincides with Sally Gadow’s claim that the hallmark of consumerism is “indifference to outcome.” Consumerism in health care, she believes, leads to “professional disappearance from clinical decision making. As moral agents, professionals cease to exist; they function only as adjuncts to patient autonomy. Patients, too, disappear, to reappear as consumers.”32 In the context of informed choice, this “disappearance” of the professional caregiver from decision-making presumes that the health professional’s main responsibility is to convey information non-directively to the patient, who will then be enabled to make an ‘autonomous’ decision. Such an assumption, however, does not fit with a midwifery ethics that values the development of a supportive, responsive, committed relationship of trust and shared decision-making between caregiver and client. Nor does it fit with the traditional midwifery ideal of the caregiving relationship as one in which women and midwives exchange diverse forms of knowledge (including not only objective, scientific knowledge, but also emotional, intuitive, spiritual, narrative, and other ways of knowing) in an intimate, cooperative, and continuously evolving environment.33 However, given midwifery’s new position as a regulated member of the larger, biomedically dominated health care system in Canada, clearly new cultural pressures exist for it to adopt a more reductive, unidirectional, and
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‘evidence-based’ model of communication for informed choice. For midwifery as for other areas of health care, an uncritical consumerist, biomedical approach to informed choice encourages health practitioners to think that their professional responsibility is simply to make information available to health care consumers, who are then ‘free’ to make their own choices. 6.
Re-thinking Informed Choice in Midwifery
Despite the important role that informed choice has played both in the context of lobbying efforts to secure legal status for midwifery as a self-regulated profession in Canada and in the context of regulated midwifery’s women-centred philosophy of health care, the foregoing analysis indicates some of the challenges associated with informed choice as an ethical ideal in midwifery. To the extent that the meaning of informed choice is constructed within the dominant context of a consumerist, neoliberal, biomedical ideology of health care, it clearly possesses troubling ethical dimensions. In this dominant context, the concept of ‘choice,’ and its associated values of ‘autonomy’ and ‘freedom,’ mystify the social determinants of choice; the concept of ‘informed’ privileges ‘objective,’ ‘scientific’ information and it presupposes a unidirectional, ‘non-directive’ model of knowledge provision that encourages professional distance rather than engagement between care-giver and care-receiver. Even though Canadian midwifery has traditionally attempted to situate itself outside the culturally-privileged norms of medically-dominated health care, it would be naive to assume that any health field can articulate and practice a model of health care that is not, at least to some extent, shaped by these cultural norms and that does not, at least to some extent, reproduce them. In particular, the apparently progressive aspects of an ideology of consumerism, with its emphasis on the individual consumer’s right to choice, on the surface seems consonant with an alternative, women-centred ideology of health care. However, as feminist critics are increasingly pointing out, such an individualistic ideology is highly problematic as an ethical framework for a truly alternative, women-centred approach to health care: it is overly complicit with dominant interests and values. More generally, critics of a neo-liberal ideology of health care consumerism caution us to be wary of how the ostensibly empowering principle of informed choice may be deployed to obscure the new forms of social regulation that shape all consumers’ experiences of health care. Given these limits and problems, is there any hope for informed choice as a guiding principle for Canadian midwifery care? Perhaps there is, but only, I would argue, if the principle is carefully re-conceived in explicitly feminist ethical and epistemological terms – terms that openly resist and re-configure mainstream values and assumptions. Ensuring that midwifery provides a real and meaningful alternative to dominant
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approaches requires ongoing critical reflection and an explicit articulation of an alternative feminist ethics of communication. Simply claiming that midwifery provides women-centred health care because it promotes informed choice is not enough; the distinctive ethics of midwifery’s approach to informed choice needs to be more clearly and strongly asserted in order to avoid, or at least alleviate, the kinds of ethical problems I have just outlined. Such an explicit re-thinking of what informed choice means in the context of midwifery has implications not only for how midwives and their clients interact; it likewise, I hope, provides a starting point for re-considering the meaning and ethics of informed choice in other health fields. To this end, my colleague Susan James and I have begun to sketch a relational model of informed choice that is consonant with feminist epistemology and health care ethics.34 This model draws on Sherwin’s concept of “relational autonomy.” Instead of regarding patients as paradigmatically independent, self-interested, and self-sufficient, feminist relational theory understands “selfhood as an ongoing process, rather than as something static or fixed. Relational selves are inherently social beings that are significantly shaped and modified within a web of interconnected (and sometimes conflicting) relationships.”35 For midwifery, Sherwin’s conceptualization of relational autonomy helps to emphasize that the women for whom midwives facilitate informed choice, as well as midwives themselves, are complex, evolving selves whose identities are shaped through intricate, dynamic webs of relationships. Rather than seeing informed choice as a mechanism for presenting women with consumer options that they choose ‘independently’ and ‘selfsufficiently,’ relational theory stresses how women’s decisions are socially shaped by the web of relationships that form their lives. From this point of view, the evolving relationship between the woman and her midwife becomes a defining feature of informed choice. Midwives who see informed choice as a process of creating relationships with women may be less concerned about the question of ‘influencing’ or directly ‘advising’ women during the decision-making process. They may be more willing to see their professional responsibility not as presenting a woman with all the information and then leaving her alone to make her autonomous decision, but as engaging with her throughout the process to determine, together, what constitutes the best decisions given the views and experiences of both woman and midwife. This committed approach, this willingness to become engaged in the relationship potentially counters some of the problematic dimensions of consumerist and individualistic ideologies of health care. Further, by contrast with the transmission model of communication which underlies mainstream views of informed choice, a feminist ethical-epistemological approach understands informed choice as a twoway, inter-subjective communication process in which midwives and
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women together truly exchange information. That is, midwives do not only share knowledge and information with women, but women likewise share their different knowledge and information with midwives. Through this exchange, they co-create the knowledge that will facilitate the woman’s decisions and the midwife’s care. Importantly, such a process invites the midwife to listen attentively to the woman as much as it requires her to provide information. A relational approach to informed choice recognizes and encourages diverse types of information and ways of knowing, and it acknowledges that no information is value-neutral. This model explicitly recognizes that midwives and clients possess different but equally valuable types of knowledge: a woman’s prior experiences, her emotions and intuitions, her knowledge gained from friends and family, her spiritual beliefs, and so on, all have a potential role to play in the informed choice process, since all are likely to influence the decisions that a woman makes, whether or not they are explicitly discussed. Ultimately, this model of informed choice asks the midwife to become informed about her clients, to engage in a “process of knowing other people [that] requires constant learning: how to be with them, respond to them, act toward them.”36 As an inter-subjective process of communication, this approach to informed choice has the potential to recreate what both women and midwives know and believe. Through this interactive caregiving process, potentially both may be transformed.
Notes 1
I am grateful for support from the Social Sciences and Humanities Research Council of Canada for this research, for Susan James’ vital contributions to the project, and for Stephanie Giroux’s editorial assistance in completing this article. 2 Richard Gwyn, Communicating Health and Illness (London: Sage Publications, 2002), 79. 3 Saras Henderson and Alan Petersen, “Introduction: Consumerism in Health Care,” in Consuming Health: The Commodification of Health Care, ed. Saras Henderson and Alan Petersen (NY: Routledge, 2002), 4. 4 These are Alberta, British Columbia, Manitoba, Ontario, Quebec, and the Northwest Territories. Ontario was the first province to enact midwifery legislation in 1994; currently, Alberta is the only province which has granted midwifery self-regulated status but does not publicly fund it. 5 Midwifery Task Force of Ontario, A Brief Presented to the Task Force on the Implementation of Midwifery in Ontario (Toronto: Legislative Library of Ontario, 1986), “Summary.”
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Ontario, “Regulated Health Professions Act, 1991,” Statutes of Ontario, Chap. 18 (Toronto: Legislative Library of Ontario, 1991), 23. 7 The exception is Quebec, where less focus is placed on informed choice in the policy documents. 8 Ontario Association of Midwives, Brief on Midwifery Care in Ontario, Submitted to the Health Disciplines Review Committee (Toronto: Legislative Library of Ontario, 1983), 4. 9 Midwifery Task Force, 8. 10 Beth Rushing, “Ideology in the Re-emergence of North American Midwifery,” Work and Occupations 20.1 (1993), 58. 11 Ibid., 59. 12 Henderson and Petersen, 4. 13 Ontario, 17. 14 Philippa Spoel and Laura Young, “Exploring Structures and Contexts of Conflict and Cooperation in a Professional Meta-Genre,” Canadian Association of Teachers of Technical Writing, Dalhousie University, Halifax, Nova Scotia, May 2003. 15 College of Midwives of Ontario, “Midwifery Model of Practice in Ontario,” in Registrant’s Binder (Toronto: College of Midwives of Ontario, 2000), 3. 16 Alberta Midwifery Health Discipline Committee, “Model of Practice,” in Registrant’s Handbook (Edmonton, AB: Alberta Midwifery Health Discipline Committee, 2002), 3. 17 Palo Almond, “What is Consumerism and Has It Had an Impact on Health Visiting Provision? A Literature Review,” Journal of Advanced Nursing 35.6 (2001): 895. 18 Deborah Lupton, “Consumerism, Reflexivity and the Medical Encounter,” Social Science and Medicine 45.3 (1997): 373-74. 19 Ian Shaw and Alan Aldridge, “Consumerism, Health and Social Order,” Social Policy & Society 2.1 (2003): 36; 40-1. 20 Henderson and Petersen, 3. 21 Susan Sherwin, “A Relational Approach to Autonomy in Health Care,” in The Politics of Women’s Health: Exploring Agency and Autonomy, ed. Susan Sherwin (Philadelphia: Temple UP, 1998), 19; 24-5; 28. 22 Abby Lippman, “Choice as a Risk to Women’s Health,” Health, Risk and Society 1.3 (1999): 284-83; 282. 23 Judy Rebick, “Is the Issue Choice?,” in Misconceptions: The Social Construction of Choice and the New Reproductive Technologies, ed. Gwynne Basin, Margrit Eichler, and Abby Lippmann. (Hull, QC: Voyageur, 1993), 87-8. 24 Flis Henwood et al., “‘Ignorance is Bliss Sometimes’: Constraints on the Emergence of the ‘Informed Patient’ in the Changing Landscapes of Health Information,” Sociology of Health and Illness 25.6 (2000): 591. 25 Sherwin, 27.
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Jon Emery, “Is Informed Choice in Genetic Testing a Different Breed of Informed Decision-making? A Discussion Paper,” Health Expectations 4 (2001): 81-6. 27 Alan Petersen, “Counselling the Genetically ‘At Risk’: The Poetics and Politics of ‘Non-Directiveness’,” Health, Risk and Society 1.3 (1999): 255. 28 See for example Nina Hallowell, “Advising on the Management of Genetic Risk: Offering Choice or Prescribing Action?,” Health, Risk and Society 1.3 (1999): 267-80; Susan Michie and Theresa Marteau, “Genetic counselling: Some Issues of Theory and Practice,” in The Troubled Helix: Social and Psychological Implications of the New Human Genetics, ed. Theresa Marteau and Martin Richards, (Cambridge: Cambridge UP, 1996), 104-22; Clare Williams et al., “Is Nondirectiveness Possible within the Context of Antenatal Screening and Testing?,” Social Science and Medicine 54.3 (2002): 339-347. 29 Josephine Green and Helen Statham, “Psychological Aspects of Prenatal Screening and Diagnosis,” in The Troubled Helix: Social and Psychological Implications of the New Human Genetics, ed. Theresa Marteau and Martin Richards (Cambridge: Cambridge UP, 1996), 151; 143. Concerning the role of structural and social factors, see also Glyn Elwyn et al, “Shared Decision-Making and Non-Directiveness in Genetic Counselling,” Journal of Medical Genetics 37 (2000): 135-138.; Angus Clarke, “Is Non-Directive Genetic Counselling Possible?,” The Lancet 338 (1991): 998-1001; Nancy Press and C. H. Browner, “Why Women Say Yes to Prenatal Diagnosis,” Social Science and Medicine 45.7 (1997): 979-989. 30 Petersen, 263. 31 Williams et al., 339-347. 32 Sally Gadow, “Nurse and Patient: The Caring Relationship,” in Caring, Curing, Coping: Nurse Physician Patient Relationships, ed. Anne H. Bishop and John R. Scudder Jr. (AL: UP of Alabama, 1983), 35. 33 Susan James, “Regulation: Changing the Face of Midwifery?,” in The New Midwifery: Reflections on Renaissance and Regulation, ed. Farah Shroff (Toronto: Women’s Press, 1997), 184. 34 Susan James and Philippa Spoel, “Uncovering Tensions in the Practice of Informed Choice,” Canadian Association of Midwives, Montreal, Oct 2003. 35 Sherwin, 35. 36 Sherwin, 42.
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Bibliography Alberta Midwifery Health Discipline Committee. “Model of Practice.” In Registrant’s Handbook. Edmonton, AB: Alberta Midwifery Health Discipline Committee, 2002. Almond, Palo. “What is Consumerism and Has It Had an Impact on Health Visiting Provision? A Literature Review.” Journal of Advanced Nursing 35.6 (2001): 893-901. Clarke, Angus. “Is Non-Directive Genetic Counselling Possible?” The Lancet 338 (1991): 998-1001. College of Midwives of Ontario. “Midwifery Model of Practice in Ontario.” In Registrant’s Binder. Toronto: College of Midwives of Ontario, 2000. Dixon-Woods, Mary. “Writing Wrongs? An Analysis of Published Discourses about the Use of Patient Information Leaflets.” Social Science and Medicine 52 (2001): 1417-1432. Elwyn, Glyn, Jonathan Gray, and Angus Clarke. “Shared DecisionMaking and Non-Directiveness in Genetic Counselling.” Journal of Medical Genetics 37 (2000): 135-138. Emery, Jon. “Is Informed Choice in Genetic Testing a Different Breed of Informed Decision-making? A Discussion Paper.” Health Expectations 4 (2001): 81-6. Gadow, Sally A. “Nurse and Patient: The Caring Relationship.” In Caring, Curing, Coping: Nurse Physician Patient Relationships, edited by Anne H. Bishop and John R. Scudder Jr., 31-43. AL: UP of Alabama, 1983. Green, Josephine, and Helen Statham. “Psychological Aspects of Prenatal Screening and Diagnosis.” In The Troubled Helix: Social and Psychological Implications of the New Human Genetics, edited by Theresa Marteau and Martin Richards, 140-63. Cambridge: Cambridge UP, 1996. Gwyn, Richard. Communicating Health and Illness. London: Sage Publications, 2002. Hallowell, Nina. “Advising on the Management of Genetic Risk: Offering Choice or Prescribing Action?” Health, Risk and Society 1.3 (1999): 26780.
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Henderson, Saras, and Alan Petersen. “Introduction: Consumerism in Health Care.” In Consuming Health: The Commodification of Health Care, edited by Saras Henderson and Alan Petersen, 1-10. NY: Routledge, 2002. Henwood, Flis, Sally Wyatt, Angie Hart, and Julie Smith. “‘Ignorance is Bliss Sometimes’: Constraints on the Emergence of the ‘Informed Patient’ in the Changing Landscapes of Health Information.” Sociology of Health and Illness 25.6 (2000): 589-607. James, Susan. “Regulation: Changing the Face of Midwifery?” In The New Midwifery: Reflections on Renaissance and Regulation, edited by Farah Shroff, 181-200. Toronto: Women’s Press, 1997. James, Susan, and Philippa Spoel. “Uncovering Tensions in the Practice of Informed Choice.” Canadian Association of Midwives. Montreal. Oct 2003. Lippman, Abby. “Choice as a Risk to Women’s Health.” Health, Risk and Society 1.3 (1999): 281-291. Lupton, Deborah. “Consumerism, Reflexivity and the Encounter.” Social Science and Medicine 45.3 (1997): 373-81.
Medical
Michie, Susan, and Theresa Marteau. “Genetic counselling: Some Issues of Theory and Practice.” In The Troubled Helix: Social and Psychological Implications of the New Human Genetics, edited by Theresa Marteau and Martin Richards, 104-22. Cambridge: Cambridge UP, 1996. Midwifery Task Force of Ontario. A Brief Presented to the Task Force on the Implementation of Midwifery in Ontario. Toronto: Legislative Library of Ontario, 1986. Ontario. “Regulated Health Professions Act, 1991.” Statutes of Ontario, Chap. 18. Toronto: Legislative Library of Ontario, 1991. Ontario Association of Midwives. Brief on Midwifery Care in Ontario, Submitted to the Health Disciplines Review Committee. Toronto: Legislative Library of Ontario, 1983. Petersen, Alan. “Counselling the Genetically ‘At Risk’: The Poetics and Politics of ‘Non-Directiveness’.” Health, Risk and Society 1.3 (1999): 253-65.
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Press, Nancy and C. H. Browner. “Why Women Say Yes to Prenatal Diagnosis.” Social Science and Medicine 45.7 (1997): 979-989. Rebick, Judy. “Is the Issue Choice?” In Misconceptions: The Social Construction of Choice and the New Reproductive Technologies, edited by Gwynne Basin, Margrit Eichler, and Abby Lippmann. 87-89. Hull, QC: Voyageur, 1993. Rushing, Beth. “Ideology in the Re-emergence of North American Midwifery.” Work and Occupations 20.1 (1993): 46-67. Shaw, Ian and Alan Aldridge. “Consumerism, Health and Social Order.” Social Policy & Society 2.1 (2003): 35-43. Sherwin, Susan. “A Relational Approach to Autonomy in Health Care.” In The Politics of Women’s Health: Exploring Agency and Autonomy., edited by Susan Sherwin, 19-47. Philadelphia: Temple UP, 1998. Spoel, Philippa, and Laura Young. “Exploring Structures and Contexts of Conflict and Cooperation in a Professional Meta-Genre.” Canadian Association of Teachers of Technical Writing. Dalhousie University, Halifax, NS. May 2003. Williams, Clare, Priscilla Alderson, and Bobbie Farsides. “Is Nondirectiveness Possible within the Context of Antenatal Screening and Testing?” Social Science and Medicine 54.3 (2002): 339-347.
Note on Contributor Philippa Spoel is Associate Professor of Rhetorical Studies in the Department of English at Laurentian University, Ontario. She is also a former midwifery “consumer.” Her main scholarly interests include healthcare discourse, professional communication, feminist rhetorical theory, and feminist ethics and epistemology. Currently, she is principal investigator in a project that researches the textual formation of midwifery’s professional identity in the Canadian context.
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Towards a Concept of Hope: A Functional Reconceptualization Stephen Michael Neff Abstract The concept of hope, though greatly debated over the years, still eludes a formal definition. As this paper seeks to move the discussion on the concept of hope forward, it will not recapitulate theoretical orientations. Instead it will offer thoughts on the concept of hope that are grounded in empirical research; a view of hope is obtained by examining its functional characteristics. Specifically, the paper reviews empirical studies on hope’s inspiration and maintenance within the field of nursing. From the perspective of inspiration, two seemingly competitive conceptions are found. The research embodying the first conception shows that hope is inspired relationally, through emotionally significant relationships. Competing research asserts that hope is more of an idiosyncratic attribute whose inspiration is tied more closely to the individual’s agency and sense of power. The cognitive dissonance between the two views is considered and reconciled. In light of this reconciliation, a preliminary reconceptualization of hope is proposed: hope is a relational product of hoping. Hoping is relating to the future as a subject whose subjectivity is created by projecting feelings generated from relationships onto the future. Keywords: hope, hoping, relationality, future, relationship, nursing 1.
Introduction
Hope has long been viewed as the blessed child of the church. Indeed, it ranks as one of St Paul’s three great virtues along with faith and love. Over the last one hundred years, with the ascension of psychology, hope has been recast as a function of desire or positive expectation. Torn from its metaphysical moorings, hope now abides discretely within the mind of the individual. Hope has undergone a translation from theological virtue to an idiosyncratic attribute. This translation constitutes a comparatively hurried process if one considers that the theological version of hope has been thousands of years in the making. Regardless of one’s theoretical orientation towards hope, one is compelled to wonder if some vital aspect of the former incarnation has been excluded. To this end the present review of the literature has been conducted. The purpose of this paper is stimulate the discussion on hope, in order that we might guard against the reduction of the concept of hope in
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its current instantiation. In particular, one of the views not currently in discussion is the functional aspect of hope – what gives hope life? What maintains hope? No one has performed a literature review or generated a concept of hope from the point of view of what has been empirically shown to inspire or maintain hope. Part of the reason for this oversight is that there has not been a substantive body of literature regarding the functional aspects of hope. Now, however, such a possibility exists within the literature of the field of nursing. In reviewing the nursing literature, though, it becomes apparent that there is a difference of opinion on what inspires and maintains hope. Two competing conceptions of hope emerge: alongside the concept of hope based on an individual’s desire or expectations, a relationally-grounded concept of hope emerges. Due to the varied nature of the research presented, it is important that we begin with a roadmap for this review of the literature. We begin this review where many others in the field of nursing have, with the oftcited empirical study of Dufault and Martocchio.1 The pair establish one of the earliest empirical concepts of hope from their qualitative research. From within this framework, we will review studies that give us an empirically-grounded sense of what inspires hope; the studies conducted by Cutcliffe and Grant,2 Cutcliffe,3 and Gibson4 help to elucidate the relationality between emotionally significant relationships and hope inspiration. Following these studies, we will consider the more idiosyncratic elements of hope inspiration; studies by Bunston, Mings, Mackie and Jones,5 Salerno,6 McCann7 and Wall8 discuss the relationship between an individual’s sense of power, locus of control and hope. From these studies we will attempt to discern how a sense of power and control affect one’s ability to hope. These considerations will lead to a deeper analysis of efficacious elements in hope inspiration which will engender my conclusion, the conceptual revamping of hope in relational terms. 2.
Method
The research for this enterprise was culled from the field of nursing. This may come as a surprise to many, as nursing has not often been seen as the “go-to” discipline for psychological discourse. Still, nursing has the proud distinction of being the pre-eminent research field on hope-inspiration for the past twenty years. To search as comprehensively as possible, a keyword search of the term ‘hope’ was performed on CINAHL (Cumulative Index to Nursing & Allied Health Literature) and produced nearly one thousand articles. I narrowed the search to only those articles that were empirical investigations, qualitative and quantitative, concerning the inspiration of hope. This method returned a much more manageable nineteen articles whose salient findings I have assembled here.
Stephen Michael Neff 3.
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What Hope is Made of: A Review of Relevant Literature
In their 1985 study Dufault and Martocchio developed a theory on the structure of hope. Their study was conducted on two populations each of which was surveyed over a two year period with the purpose of describing hope and its “spheres and dimensions.” Initially, Dufault and Martocchio surveyed a population of 35 elderly patients (those 65 and older). They then collected data from 47 terminally-ill patients (fourteen years and older) and found similar results on how hope was maintained through a “reanalysis of longitudinal data.” All data were collected through the observation of the participants in a number of settings. The following structure of hope assembled by Dufault and Martocchio is complex and multilayered. One facet of their proposed structure addresses the ‘spheres of hope.’ Dufault and Martocchio describe two spheres of hope, generalized and particular. Generalized hope is characterized by “a sense of some future beneficial but indeterminate development.”9 Generalized hope manifests itself as a general outlook. Dufault and Martocchio found that this hope gives “overall motivation to carry on with life’s responsibilities” as well as a “flexibility and openness to changing events.”10 Generalized hope is without an object, unlike its complementary sphere, particularized hope. Particularized hope is “concerned with a particularly valued outcome, good, or state of being, in other words, a hope object.”11 The particularized hope sphere is characterized by both desire and an expectation for particular circumstances to materialize. An individual exercising particularized hope might look forward to an upcoming event or to the completion of a project. Dufault and Martocchio understood that particularized hope “clarifies, prioritizes, and affirms what a hoping person perceives important in life.”12 Particular hopes represent an investment in life and reveal a commitment and attachment to something specific extending temporally into the future. Particular hopes can be identified and are open to revision both in terms of the hoped for object or outcome and the means by which the hoped for object or outcome is obtained. The manipulation of particularized hope is the intervention accessed by cognitive therapies. The fluidity of particularized hope is the characteristic that allows it to thrive even when frustrated. Dufault and Martocchio found that the hope of the individuals in the study fluctuated. They noted that as one sphere of hope was compromised, the other sphere displayed a more prominent role in maintaining hope. As particularized hopes were threatened or abandoned, individuals often were found reminiscing about the good things in their life or “how things have worked out before.”13 Doing so helped them maintain an overall positive outlook. By contrast, when generalized hope was threatened by such possibilities as limited life expectancy, individuals were seen to invest more in particularized hopes. The spheres functioned
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complementarily to help the individuals give meaning to their lives and stay involved with the process of living, even if outcomes seemed bleak. Along with this complementarity between spheres, there exist many commonalities. Dufault and Martocchio identified six such commonalities, which they termed ‘dimensions.’ These dimensions operate in both spheres of hope, allowing added flexibility to coping by giving the individual alternate possibilities for hope when other dimensions of hope are frustrated. The one dimension that is exceptional to us, as it is to Dufault and Martocchio is the ‘affective’ dimension. As Dufault and Martocchio remark, “the affective dimension permeates the whole of the hoping process.”14 Though their model suggests that hope exists in two spheres through six dimensions operating equivalently in each sphere, they give pride of place to affect, the emotional connection one human being has with another or desired outcomes in one’s life. To hope is to feel, but more so, to feel for something or someone. At the heart of Dufault and Martocchio’s conception of hope, even in the face of death, is relationship. Dufault and Martocchio are not alone in their results, that hope is inspired and maintained by emotionally significant relationships. Cutcliffe and Grant also found that the elderly were inspired by caring relationships, though the sample was significantly different. In this grounded theory study researchers interviewed five nurses (two men and three women) who were giving care to thirty elderly clients diagnosed with Alzheimer’s type dementia at “various levels of cognitive impairment.” The interviews were semistructured and lasted one to two hours. In their responses to questions about how they inspired hope in their clients, each of the nurses revealed similar patterns in which they emphasised interpersonal interactions and a caring relationship. The nurses also said that they attempted to promote activities that would keep their clients from feeling isolated and from being ignored. They said that hope was strengthened in clients who stayed connected to the community and who felt that they were important to others and that others cared about their well-being.15 This same point concerning the maintenance of hope through relationality reverberated through a study of terminally-ill HIV patients published by Cutcliffe in 1995. He argued that how the clients felt about themselves was greatly influenced by how others treated them. Cutcliffe conducted a grounded theory study in which data was collected through semi-structured interviews. The interviews were conducted with one-third of the nursing staff at a teaching hospital in the Yorkshire region of England, though Cutcliffe did not report the actual number of nurses. All nurses were registered mental health nurses having at least two years of first-hand experience of caring for terminally-ill HIV clients. In addition, Cutcliffe found that two other variables figured prominently in the inspiration of hope: self-awareness of the nurse and the creation of a partnership with the client. Self-awareness is essential, Cutcliffe argues,
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because without it, the nurse cannot properly empathize with the client to form the partnership. Moreover, Cutcliffe argues that having a sense of self-worth is the greatest factor in facilitating hope in the clients.16 Cutcliffe sees the inspiration of self-worth as the central construct in his theory because of its ability to help remedy the effects of isolation and rejection, which are felt particularly strongly by this population. Again, though, the point remains the same: feeling self-worth from being cared for is a constitutive element in the inspiration of hope. Surveying a group of people with multiple chemical sensitivity (MCS), Gibson makes a similar point about hope. Little is known about MCS and even less can be forecasted in terms of the course of the disease, making these patients excellent subjects to determine the predictors of hope in the case of complete uncertainty.17 The study was conducted among 305 self-identified persons with MCS contacted through support groups, newsletters and a national publication. Of the 305 questionnaires mailed out, 288 people responded. A follow-up questionnaire was mailed six months after the initial questionnaire and 268 people out of the 288 respondents answered. The Herth Hope Scale (HHS)18 was used to measure hope for the two samples. In addition, social support and attitude towards healthcare were measured by part 2 of the Personal Resource Questionnaire 85 (PRQ85)19 and Healthcare Orientation subscale of the Psychosocial Adjustment to Illness Scale Self Report (PAIS-SR).20 The correlation between perceived social support and hope was extremely significant (r = .71, P = .001) and contributed to most of the variance in hope scores.21 Gibson’s study adds a rather crucial element to the discussion of the inspiration of hope. In the above studies, the populations are either dying or otherwise faced with their mortality. Gibson’s population is different; while the other population knows (to some extent) what awaits them, Gibson’s population faces only uncertainty. The medical establishment to whom all trust has been given can tell these patients precious little about their outlook. In fact, medicine is even confounded by their present state of being, unable to provide details about aetiology or course of the illness. Gibson’s population truly faces the unknown. In some sense, their problem provides more emotional turmoil than recognizing their mortality; these people do not have to worry about dying and being released from their problems. They have to worry about living and being continually at their illness’ mercy. And they do not even know what trials they will have to endure. Still, in the face of such adversity, hope is inspired by relationship. Thus far, we have had mostly consensus among the studies on hope inspiration; emotionally significant relationships do a great deal of work in inspiring and maintaining hope. While this fact will remain undisputed, what will come into question is whether emotionally significant relationships do the greatest amount of work regarding the
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inspiration of hope. The above theorists and researchers would all subscribe to a common assessment of hope: it is relationally generated and maintained. Hope exists and thrives within relationships. The theorists and researchers below, with the exception of McCann and Salerno, provide something of a challenge to this assessment in that they believe that hope rises and falls with how much control an individual has or their perceived power. While McCann and Salerno support a “relational hope” theory, their arguments bear directly upon the arguments of those researchers who have found hope more determined by an individual’s sense of power/control than by relationships. Considering McCann and Salerno’s arguments in juxtaposition with the latter will make more sense as we move into a deeper discussion of the research. McCann interviewed schizophrenic clients (n=9), partners (n=1), parents (n=7) and mental health nurses caring for the clients (n=24). McCann accompanied the nurses on home health visits and observed all the interactions between the above-mentioned parties for approximately 55 hours. McCann conducted in-depth interviews, with each lasting between 60 and 90 minutes in a private atmosphere.22 The general findings of this study were three-fold: 1) hope cannot be imposed, it must be uncovered, 2) uncovering hope involves enhancing motivation and developing goals towards wellness and, 3) only when a nurse has developed a mutually trusting relationship with clients suffering from schizophrenia can hope be uncovered (McCann). Regarding the first finding, it became evident to the researcher that when the nurse attempted to impose personal hopes or aspirations on a client concerning a specific goal, the client was likely not to achieve the goal. That is, when the client was not personally invested in the goal, because the goal was set by the nurse without consulting the client, the client had a high failure rate. The interventions that tended to be successful occurred within a context of a trusting relationship between the nurse or family member and the client where there was a mutually agreed upon goal. The role of the nurse or family member in these instances was only to “help clients draw hope from within their own resources.”23 Concerning the enhancement of motivation, clients found that their relationships with nurses provided them with motivation to begin achieving their goals, such as telling their friends that they suffered from a mental illness. The client benefited from achieving such a goal because it was the first step towards coping with their illness and involving other people as opposed to attempting to cope with their illness in isolation. This study shows that a mutually trusting relationship is helpful for providing strength and motivation to the client. The relationship with the nurse assisted the clients in achieving their own goals, such as increasing their interactions with others, and increasing their sense of hope.24 In other words, clients realized hopefulness as their relationship with the therapist empowered them to motivate and set their own goals.
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It would seem then that relationality is responsible even for creating and maintaining the sense of power and control these individuals have over their goals. This, however, is where the discord in the research begins. Bunston, Mings, Mackie and Jones have an understanding that one’s sense of control, which the researchers reference as ‘locus of control,’ actually drives one’s hopefulness and emotional well-being.25 This is a mighty claim because, if substantiated, it constitutes the rationale for maintaining the status quo with regards to hope: hope might really come from within the individual, only being buffeted by external sources and have little relational aetiology. Bunston et al. chose a population of outpatient cancer patients. The individuals (n=194) were interviewed twice, with meetings one week apart. Each interview included administration of Herth Hope Index26 and the Locus of Control Scale developed by Pearlin and Schooler.27 Locus of control is defined specifically here as the extent to which individuals believe that the outcomes of their actions are either the results of their own personal efforts (internal control) or of environmental constraints beyond their control (external control).28 In addition, other aspects of life that are known to influence hope such as occupational status, affect and quality of life were measured with Duncan’s socioeconomic index,29 the Affect Balance Scale,30 measuring psychological well-being, and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire.31,32 Pearson correlational values were determined for a wide range of factors contributing to and detracting from hope and from these correlations, and finally, a path analysis was performed. The most significant Pearson correlation values were found between hope and the quality of life indicators. The strongest relationship present was between hope and positive affect (r = .52, p < .001) with the Affect Balance Scale showing the second strongest correlation (r = .48, p < .001). Global quality of life was the third strongest correlation (r = .47, p < .001). Finally, the highly touted locus of control was fourth strongest (r = .41, p < .001). That is, those that reported more control reported more hopefulness. Correlations were also performed to see the relations between social domains and hope; remarkably, the social network need and the emotional need of the patients produced correlations of small magnitude (r = .26, p < .001 and r = .16, p < .001, respectively). From these as well as many other correlations, the authors performed a path analysis that yielded the single greatest determinant of hope, locus of control, with a Beta weight of .42.33
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The study found that hope was most influenced by locus of control both directly and indirectly; those who felt more control were seen to be more hopeful. Indirectly, as locus of control influenced a person’s coping skills and emotional functioning, it effected hope through these attributes.34 As compared with the above studies, however, emotional functioning showed little direct impact on individual’s hope in Bunston et al.’s model. This is a counterintuitive finding as the positive affect, psychological well-being and quality of life correlations were so high. In fact, these correlations were each higher than the locus of control correlation and they each have social/relational components. Alas, Bunston et al. did not explain these rather anomalous statistical findings. Instead, they conclude their research with a recommendation for planning interventions that helped increase locus of control so as to enhance hope in individuals. It would seem that despite some unexplained path analysis anomalies, one’s sense of control greatly affects one’s sense of hope. Still, two other studies on hope and power give us pause. Salerno’s findings are incongruent with those of Bunston et al. Salerno and Wall understand the relationality between hope and power to be more dubious than do Bunston et al. Salerno focused on the role of power and its relation to hope. The researchers attempt to understand whether hope or power has a greater impact on a person’s perception of themselves, that is, their potential for recovery and living a fulfilling life.35 Salerno administered three inventories to a group of 107 volunteer participants diagnosed with schizophrenia. The first of these was the Human Field Image Metaphor Scale (HFIMS),36,37 which measures self-perception regarding one’s sense of integration in one’s environment (higher scores indicating more integration, lower indication more isolation). The second inventory administered, the Power as Knowing Participation in Change Tool, Version II (PKPCT, VII),38 measured the client’s perceived sense of power, the control one has over the course of one’s life (higher scores indicating more perceived power). Finally, the third inventory administered was the Miller Hope Scale (MHS)39 which attempts to ascertain the level of hope held by the participant. Salerno found that “hope and power together did not statistically significantly contribute to more of the variance of perception of self than hope alone.”40 Hope was a greater predictor of what a person thought of their own potential than was their sense of power. Though a very strong correlation between hope and power was found (r = .74, p = .0001), a theoretical analysis indicated that these two words did represent different concepts.41 In addition, 20% of the variance in perception of self among participants was uniquely accounted for by hope after controlling for power. The researchers linked this variance to the relational and anticipatory dimensions of hope.42 Though perhaps a little surprising, this
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study reveals an interesting characteristic of hope: hope helps people connect with their potential to change and adapt more than their sense of power does. This finding, of course, directly contradicts the work of Bunston et al. Salerno’s point is not simply that hope and power are not connected. She states that hope actually predicts one’s sense of power better than one’s perceived sense of power. Just as Bunston et al. show that locus of control determines hopefulness, Salerno shows that level of hope determines locus of control. Though more will be made of this in the discussion, we must now add Wall’s study on power and hope to the chorus, so that all relevant literature can be considered in the discussion. Wall examined the relationship between power and hope more concretely, among participants who had lung cancer. The purpose of the study was to assess the change in client’s hope and power over time relating to participation in an exercise program. The sample (n=104) was randomly split into two groups, an exercising and a non-exercising group. Hope and power were measured three times. The first time (T1) was seven to ten days prior to surgery; the second (T2), the day before the surgery and the third (T3), four to six days after surgery but prior to the client receiving information pertaining to their final surgical pathology (so as not to influence their change in hope based on prognostic information). The Hope Herth Index43 was used to measure the change in hope. The Power as Knowing Participation in Change Test, Version II44 was used to measure the change in perceived power. The changes in power were evident: those clients participating in exercise had a greater sense of power and manifested that sense by increasing the difficulty of their workouts without prompting from T1 to T2 to T3. Those who did not exercise had a decrease in sense of power from T1 to T2 and maintained that low sense of power but lost no more from T2 to T3. There were, however, no changes associated with hope for either group. Each group maintained the same high level of hope throughout the study that was manifested during T1. Despite the findings, the researchers suggest that there was some moderate, positive correlation between hope and power, although no interpretation is possible from the results of this study.45 4.
Discussion and Conclusions
The articles presented in review here filter rather nicely into two categories, those finding a relational aetiology to hope and those who find hope created and sustained by individual effort, here portrayed as ‘locus of control’ and ‘power.’ By way of understatement, there is some asymmetry between the two groups: the group of articles presenting hope in relational terms seems to be a unified front while the group of articles that attempt to think about hope as an idiosyncratic attribute show a great deal of
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incongruence. While the researchers may agree that hope has a basis in the individual’s sense of power, there is certainly no consensus as to how hope relates to locus of control/power in these articles. Our first task in making sense of the articles as a whole will be to make sense of the varying views of hope and power/locus of control. Once some common ground has been established between these discordant views, we can then attempt to reconcile the research that portrays hope as an idiosyncratic attribute with the research that suggests hope is relational in nature. To begin, we must address the cognitive dissonance between Bunston et al.’s study and the works of Salerno and Wall. Each studied the individual’s ability to hope and found three different correlations regarding power. Bunston et al. show that power, or locus of control, determines the level of hope. Salerno shows that, while power and hope are different concepts, hope better approximates one’s sense of power than does one’s perceived sense of power. Finally, Wall suggests that hope and power are correlated in the context of a study that shows them not to be correlated at all. How do we begin accounting for such disparate claims? Assuming Bunston et al.’s path analysis to be correct, we must account for the fact that one’s sense of control helps determine hope. Yet at the same time, there seems to be evidence that hope and power are not related46,47 and even that hope connects us with and/or determines power.48 We have reviewed another study that may help us make sense of the relationality between power and hope, though it is not directly referenced – McCann’s work with schizophrenic patients. McCann shows that relationality can be the foundation for engendering control initially. Emotionally significant relationships foster emotional well-being and entreat patients to have and achieve particularized hopes, increasing the individual’s sense of control. Control, can ultimately, then, be seen as more a function of relationality; specifically, the relationship between a therapist and a patient. I believe what ultimately bridges the interpretive gap is a look at the populations relative to each study. Bunston et al. are working with outpatient cancer patients. McCann is working with floridly psychotic schizophrenic patients. While it is difficult to generalize about each population, general rules of physics still apply. That is, objects in motion tend to stay in motion; objects at rest tend to stay at rest. Outpatient cancer patients, while often depleted by their treatments still retain some control over their lives, choices they make and general autonomy. No one confines you to a state hospital if you have cancer. Schizophrenic patients by contrast are forced by their illness to give up their autonomy as their minds have turned against them. The point is this: schizophrenic patients have a priori less control than cancer patients due to the condition of their minds. In viewing schizophrenic patients, we view individuals whose control is often less than that of cancer patients. As such, schizophrenic patients are at a point prior to cancer patients in the process of hope inspiration and they need relational
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stimulation of goal-setting and motivation to move them to hope. Secondly, the support cancer patients get, even if only from the medical establishment is enough relational interaction to begin the process of goalsetting and motivating necessary to increase hope. The fact that they were in treatment presupposes something of the relationship described in McCann’s study and suggests the cancer patients probably derived hope relationally in a similar manner. Once control is established, it is easy to see how Bunston et al. arrived at their conclusion that control engenders hope. The larger point here is that there is consistency between the two studies, if we understand that McCann’s study represents a more primitive state of hope-inspiration and that relationship, as she shows, is the foundation for engendering control initially. Salerno’s findings are consistent with this interpretation as she found that hope actually predicts power and one’s sense of control. Thus we find that solipsistic control of one’s environment is not tantamount to hope. Rather, we have seen relationality inspire control even as it inspires hope. Furthermore, we see that even the aspect of hope that seems entirely idiosyncratic, one’s sense of power/locus of control, is relationally determined. Currently free of viewing hope as an idiosyncratic attribute, we can consider hope more deeply as a relational process through the preponderance of the evidence put forward in the studies reviewed. First and foremost it is clear that all the studies agree with varying vehemence that hope has an affective component pervading the entire act of hoping.49-52 That is, the act of hoping is sustained by the act of relating affectively to individuals and events both generalized and particular.53 Negative emotion impacts hope just as positive emotion does; hope is diminished through isolation and rejection and increases with the number of caring relationships.54,55 We see therefore a dynamic of interdependence between emotionally significant relationships and hoping. This dynamic is delineated more carefully by Cutcliffe: he notes that the way individuals are treated has a great deal of influence on how they feel about themselves. Similarly, if an individual is feeling positive self-worth, that they matter to others, their hope increases.56,57 We have also noticed, through Salerno’s work, that hope influences self-perception, at least in regards to power. The research, then, seems to indicate reciprocity between hope and the perception of self, particularly the perception of self by others, such that a boon to one will be a boon to the other and a detraction from one will be a detraction from the other.58,59 There appears to be a reciprocal process between perception of self and hope and a new concept of hope can be couched within this relationship. 5. Reflections on the Concept of Hoping – a Preliminary Sketch I suggest first that we define hoping in terms of emotionally significant relating on the basis of empirical evidence. Hope seems to
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thrive with the existence of interaction in emotionally significant relationships, and withers when such interaction is absent. Relationships are a necessary condition to the process of hoping. This necessity is evinced by the fact that when relationships are strong, hoping is possible and hope is therefore stronger. When relationships are poor, hoping becomes more difficult and hope thereby declines. I propose that the reason why hoping experiences this tight correlation with relationships is that hoping is those same relationships projected on the future. To consider hoping as a relationship, or a relating to be more precise, we still must consider that to which hoping is relating. After all, there is not simply a relating; there is always a relating to, or a relating with. For us, hoping is the activity of relating to the future. Hoping, though, is never without its affective component, as Dufault and Martocchio have attested. The character of this relating takes on the emotional quality of the relationships that give it life; it is the character of the reciprocal relationship discussed above; we relate to the future as we are related to in the present and have been related to in the past. Past and present relationships act on the individual to make them feel a certain way and this feeling is projected onto the future in the act of relating to the future. It is this affective relating to the future that I call hoping. ‘Future,’ then, seems to be a product generated by the projected relational residue of relations occurring in the present moment and in the past. We relate to the future as if it were a subject, a composite subject, the sum total of our relational experience. What we hope for and how much we hope is then shaped by the amalgam of positive and negative relational experiences we have had. More, though, our hope is determined by our relationship with our projected future. As we have affectively projected our future, it then embodies a certain emotional reality distinct from us with which we can interact. Hope, then, is that state which is generated from our relationship with an emotionally charged, “subjectified” future. Thus, hope can be understood as a strictly relational concept, itself a product of relationality. It is possible from this perspective to see, however, how one might think of hope as the idiosyncratic attribute of the individual; the state of hope manifests idiosyncratically. That is, I am the only one who can embody/represent my hopefulness. The hope that I am so idiosyncratically manifesting, however, was generated and is being maintained through relationships – those I have had in the past, those I have in the present with individuals, objects and events and, finally, with the future itself.
Notes 1
Karin Dufault and Benita Martocchio, “Hope: Its Spheres and Dimensions,” The Nursing Clinics of North America, 20 (1985): 379-391.
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John Cutcliffe and Gordon Grant, “What Are the Principles and Processes of Inspiring Hope in Cognitively Impaired Older Adults within a Continuing Care Environment?” Journal of Psychiatric and Mental Health Nursing, 8 (2001): 427-436. 3 John Cutcliffe, “How do Nurses Inspire and Instill Hope in Terminallyill HIV Patients?” Journal of Advanced Nursing, 22 (1995): 888-895. 4 Pamela Reed Gibson, “Hope in Multiple Chemical Sensitivity: Social Support and Attitude Towards Healthcare Delivery as Predictors of Hope,” Journal of Clinical Nursing, 8 (1999). 5 Terry Bunston, Deborah Mings, Andrea Mackie and Diane Jones, “Facilitating Hopefulness: the Determinants of Hope,” Journal of Psychosocial Oncology, 13 (1995). 6 Elizabeth Meehan Salerno, “Hope, Power and Perception of Self in Individuals Recovering from Schizophrenia: a Rogerian Perspective,” Visions: the Journal of Rogerian Nursing Science 10, (2002): 23-36. 7 Terrence McCann, “Uncovering Hope with Clients Who Have Psychotic Illness,” Journal of Holistic Nursing, 20 (2002): 81-99. 8 Lisa M. Wall, “Changes in Hope and Power in Lung Cancer Patients Who Exercise,” Nursing Science Quarterly, 13 (2000): 234-242. 9 Dufault and Martocchio, “Hope: Its Spheres and Dimensions,” 380. 10 Ibid., 380. 11 Ibid., 380. 12 Ibid., 381. 13 Ibid., 380. 14 Ibid., 384. 15 Cutcliffe and Grant, “Principles and Processes of Inspiring Hope.” 16 Cutcliffe, “Hope in Terminally-ill HIV Patients.” 17 Gibson, “Hope in Multiple Chemical Sensitivity.” 18 Kaye Herth, “Abbreviated Instrument to Measure Hope: Development and Psychometric Evaluation,” Journal of Advanced Nursing, 17, (1991): 1251-1259. 19 Clarann Weinert, “A Social Support Measure: PRQ85,” Nursing Research, 36 (1987): 273-277. 20 Leonard R Derogatis, “The Psychosocial Adjustment to Illness Scale (PAIS),” Journal of Psychosomatic Research, 30 (1986): 77-91. 21 Gibson, “Hope in Multiple Chemical Sensitivity.” 22 McCann, “Uncovering Hope in Psychotic Illness.” 23 Ibid., 95. 24 Ibid., 95. 25 Bunston et al., “The Determinants of Hope.” 26 Kaye Herth, “Development and Refinement of an Instrument to measure Hope,” Scholarly Inquiry for Nursing Practice: An International Journal, 5 (1991): 39-51. 27 Leonard Pearlin and Carmi Schooler, “The Structure of Coping,” Journal of Health & Social Behavior 19, (1978): 2-21.
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Bunston et al., “The Determinants of Hope,” 88. David L. Featherman and Gillian Stevens, “A revised socioeconomic index of occupational status: Application in analysis of sex differences in attainment,” in Social Structure and Behavior, ed. R. M. Hauser, A. O. Haller, and T. S. Hauser (New York: Academic Press, 1982): 141-181. 30 Norman Bradburn, The structure of psychological well-being ( Illinois: Aldine Publishing, 1969). 31 Neil K. Aaronson et. al., “The EORTC Core Quality-of-Life Questionnaire: Interim results of an international field study,” in Effect of cancer on quality of life, ed. D. Osoba (Florida: CRC Press, 1991): 185203. 32 Neil K. Aaronson et al., “The European Organization for Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrument for Use in International Clinical Trials in Oncology,” Journal of the National Cancer Institute 85, (1993): 365-376. 33 Bunston et al., “The Determinants of Hope,” 94-95. 34 Ibid. 35 Salerno, “Hope, Power and Perception of Self.” 36 Linda W. Johnston, “The development of the human field image metaphor scale,” Unpublished Doctoral Dissertation, Medical College of Georgia. University Microfilms International, 93, 23297. 37 Linda W. Johnston, “Psychometric analysis of Johnston’s human field image metaphor scale,” Visions: The Journal of Rogerian Nursing Science 2, (1994): 7-11. 38 Elizabeth Ann Manhart Barrett, “Power as knowing participation in change tool.” Available from Dr. E. A. M. Barrett, 415 East 85th Street, New York, NY 10028 (1987, 1998). 39 Judith Fitzgerald Miller and Marjorie J. Powers, “Development of an Instrument to Measure Hope,” Nursing Research, 37 (1988): 6-10. 40 Salerno, “Hope, Power and Perception of Self,” 32. 41 Ibid. 42 Ibid. 43 Herth, “Development and Refinement of an Instrument.” 44 Barrett, “Power as Knowing Participation Tool.” 45 Wall, “Changes in Hope and Power.” 46 Salerno, “Hope, Power and Perception of Self.” 47 Wall, “Changes in Hope and Power.” 48 Salerno, “Hope, Power and Perception of Self.” 49 Dufault & Martocchio, “Hope: It’s Spheres and Dimensions.” 50 Cutcliffe and Grant, “Principles and Processes of Inspiring Hope.” 51 Gibson, “Hope in Multiple Chemical Sensitivity.” 52 McCann, “Uncovering Hope in Psychotic Illness.” 53 Dufault & Martocchio, “Hope: It’s Spheres and Dimensions.” 54 Cutcliffe, “Hope in Terminally-ill HIV Patients.” 55 Gibson, “Hope in Multiple Chemical Sensitivity.” 29
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56
Cutcliffe, “Hope in Terminally-ill HIV Patients.” Gibson, “Hope in Multiple Chemical Sensitivity.” 58 Cutcliffe, “Hope in Terminally-ill HIV Patients.” 59 Gibson, “Hope in Multiple Chemical Sensitivity.” 57
Bibliography Aaronson, Neil. K. et. al., “The EORTC Core Quality-of-Life Questionnaire: Interim results of an international field study,” in Effect of cancer on quality of life, ed. D. Osoba (Florida: CRC Press, 1991). Aaronson, Neil. K. et. al., “The European Organization for Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrument for Use in International Clinical Trials in Oncology,” Journal of the National Cancer Institute 85, (1993). Barrett, Elizabeth Ann Manhart, “Power as knowing participation in change tool.” Available from Dr. E. A. M. Barrett, 415 East 85th Street, New York, NY 10028 (1987, 1998). Bradburn, Norman, The structure of psychological well-being ( Illinois: Aldine Publishing, 1969). Bunston, Terry, Deborah Mings, Andrea Mackie and Diane Jones, “Facilitating Hopefulness: the Determinants of Hope,” Journal of Psychosocial Oncology 13, 1995. Cutcliffe, John, “How do Nurses Inspire and Instill Hope in Terminally-ill HIV Patients?” Journal of Advanced Nursing 22, (1995). Cutcliffe, John. and Gordon Grant, “What Are the Principles and Processes of Inspiring Hope in Cognitively Impaired Older Adults within a Continuing Care Environment?” Journal of Psychiatric and Mental Health Nursing 8, (2001). Derogatis, Leonard R., “The Psychosocial Adjustment to Illness Scale (PAIS),” Journal of Psychosomatic Research 30, (1986). Dufault, Karin and Benita Martocchio. Benita Martocchio, “Hope: Its Spheres and Dimensions,” The Nursing Clinics of North America 20, (1985). Featherman, David. L. and Gillian Stevens, “A revised socioeconomic index of occupational status: Application in analysis of sex differences in
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attainment,” in Social Structure and Behavior, ed. R. M. Hauser, A. O. Haller, and T. S. Hauser (New York: Academic Press, 1982). Gibson, Pamela Reed, “Hope in Multiple Chemical Sensitivity: Social Support and Attitude Towards Healthcare Delivery as Predictors of Hope,” Journal of Clinical Nursing 8, (1999). Herth, Kaye, “Development and Refinement of an Instrument to measure Hope,” Scholarly Inquiry for Nursing Practice: An International Journal 5, (1991). Herth, Kaye, “Abbreviated Instrument to Measure Hope: Development and Psychometric Evaluation,” Journal of Advanced Nursing, 17, (1992). Johnston, Linda W., “The development of the human field image metaphor scale,” Doctoral Dissertation, Medical College of Georgia. University Microfilms International, 93, 23297. Johnston, Linda W., “Psychometric analysis of Johnston’s human field image metaphor scale,” Visions: The Journal of Rogerian Nursing Science 2, (1994): 7-11. McCann, Terence, “Uncovering Hope with Clients Who Have Psychotic Illness,” Journal of Holistic Nursing 20, (2002). Miller, Judith Fitzgerald. and Marjorie J. Powers, “Development of an Instrument to Measure Hope. Nursing Research 37, (1988). Pearlin, Leonard, and Carmi Schooler, “The Structure of Coping,” Journal of Health & Social Behavior 19, (1978). Salerno, Elizabeth Meehan, “Hope, Power and Perception of Self in Individuals Recovering from Schizophrenia: a Rogerian Perspective,” Visions: the Journal of Rogerian Nursing Science 10, (2002). Wall, Lisa M. “Changes in Hope and Power in Lung Cancer Patients Who Exercise,” Nursing Science Quarterly 13, (2000). Weinert, Clarann. “A Social Support Measure: PRQ85,” Nursing Research 36, (1987).
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Note on Contributor Stephen Neff holds a Master’s of Divinity from Princeton Theological Seminary and is currently working on a Master’s of Science in Nursing degree in Nurse Psychiatry at the University of Pennsylvania. He can be contacted at
[email protected].
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Embodied Practices and Subjectivity in Psychopathology Ian Tucker Abstract This chapter is focused on gaining insight into the everyday experiences of people diagnosed ‘schizophrenic'.1 A conceptual focus on embodiment is articulated through an analysis of transcripts of interviews with people who have experienced mental health difficulties. Through this it can be seen that everyday management of such difficulties and psychiatric medication can involve developing individual strategies and practices that produce a somatic state that enables a ‘normal’ level of bodily activity to be attained. The relations between embodied practices, activity levels and social spaces are crucial to maintain for users as part of living with mental health difficulties in the community settings in which they exist. Key Words: Embodiment, phenomenology, somatic management, social space, mental health service users 1.
Introduction
The concern of this chapter is to analyse the subjective experiences of people who have been diagnosed ‘schizophrenic.’ A conceptual framework will be built on influences drawn from social theory, social psychology and phenomenology, and used to articulate an analysis of data collected from interviews. The purpose of this is to address some of the issues of living with a diagnosis of ‘schizophrenia’ and the consequent medication that it brings, and to do this from the perspective of the people who have received such a diagnosis, people who I will refer to as ‘service users,’ a shortened version of ‘mental health service users.’ More specifically the central focus will be on service users’ medication, and the practices involved in everyday management of medication regimens, practices that are very much based upon embodied experience. Much of the knowledge surrounding psychopathology comes from the biomedical framework of mainstream psychiatry which forms an objective body of knowledge aiming to inform as to the nature of the neuro-chemical factors associated with mental illness. It is argued here that this work needs to be supplemented with service user-centred research, which focuses on unravelling the whole subjective experience of psychopathology. Such an approach enables insight into the ways service users make sense of, and relate to, their illness within the overarching objective framework of psychiatric knowledge. Previous literature2 has
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stressed the importance of building a body of user knowledge in order to gain insight into what it means to people to live with mental health difficulties. The objective focus of mainstream psychiatric research does not place service user knowledge at the forefront of its empirical concerns, thus does not provide insight regarding their subjective understandings of their experiences. Within the empirical focus on service user experience in this chapter is a conceptual concern with embodiment. Although the body has become an important site of investigation for social theory in recent times, it has been argued that across the disciplines of sociology and social psychology the body remains inadequately theorised within the field of social constructionism.3 Within this cross-disciplinary area it is held that human experience is indelibly linked to and constituted by social processes, and as such the empirical drive has always been towards analysing, deconstructing, and articulating the nature of social practices. Indeed, a great deal of theoretical work exists concerning the role of social processes and structures in the representation and construction of our bodies,4 with a vast range covered in terms of conceptual arguments (and differences) regarding the nature and functionality of social processes. What they share, though, is a lack of theory regarding the embodied active nature of our everyday experiences. Through focusing so single-mindedly on social factors, theory remains bereft of any notion of individual agency. Thus, the argument laid out in the present paper is that we are active social beings, and as such are in a constant relationship with the social. In addition to the empirical focus on social practices, an empirical focus is needed that conceptualises individual embodiment, and how this relates to wider social practices. The work of social constructionist theory is valuable in theorising the nature of some of the social processes that contribute to our everyday existence, but in addition to this, what is required is a conceptualisation of human experience as grounded in individual embodied activity. The focus on service users’ everyday experiences is based upon a need to gain insight into their own knowledge systems, which it is argued are foundationally developed through embodied experiences. It could be argued that to adequately account for and conceptualise embodiment in psychopathology what is required is some understanding of the actual bodily processes involved when taking medication. Such an example would be an understanding of the neuro-chemical effects of medication, which of course would be a very embodied process. The argument against this in the present study is that an understanding of the biochemical efficacy of medication does not provide insight into service users’ own subjective experiences, and how they make sense of, and relate to, their medication. It may well be that they are not aware of the actual biochemical activity in their brains enacted by their medication. Thus, to take a service user-centred perspective in this context means not making assump-
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tions about the efficacy of the medication service users take. It is not of interest whether the knowledge service users have is ‘correct’ as such, in terms of whether they are aware of what the medication should do, because it is not a biochemical understanding of service users’ bodies that is sought. What is of interest is service users’ ‘practical knowledge,’ that is the knowledge they have which they build up through everyday experience, as this forms the basis of the day-to-day management of their lives. This is not to suggest that biochemical effects are not existent and affective in their everyday lives, but rather that to build knowledge of service users’ subjective experiences one has to conceptualise these as embodied; not in the scientific sense, but in the phenomenological sense of one’s own knowledge of embodied experience. It is service users’ phronetic knowledge, that built on embodied experience, which is of interest, rather than any form of clinical objective knowledge. 2.
Agency
The importance of the work of Merleau-Ponty5 is in the conceptualisation of human experience as fundamentally coming through embodied activity. It is through embodied activity that we make sense of the world, and how we do so is fundamentally based upon our own active existence in the social contexts that form our experiences. For MerleauPonty it is not just that we have bodies, but that we are bodies, and thus all our experience is embodied. What this theorisation brings to the present study is the notion that we are not just the products of societal processes, but in fact exist within and through social processes as embodied actors. This is also central to a psychological understanding of service users’ everyday management of their lives, as it enables this self-activity to be incorporated, rather than just focusing on the wider social processes that form psychopathology. To argue that agentic embodied activity is fundamental to a valid conceptualisation of service users’ lives is not to argue that a total agency exists in which they have a range of freedom to comfortably make decisions regarding key parts of their lives. Rather, this agency is likely to be limited but, in turn, this does not negate its existence in entirety either. Merleau-Ponty recognised that bodies are both active and acted upon. Thus an inter-relation exists in which both societal process and individual activity merge to form everyday embodiment. As discussed earlier, the ‘side’ of this relation that focuses on social processes has been more theorised in respect to psychopathology, and as such it is the ‘active body’ side that is focused upon in this chapter. This is not to suggest that these conceptualisations should be seen as incompatible. Crossley6 argues that the two most influential theorists in this area, Foucault and Merleau-Ponty, should not necessarily be seen in opposition. Indeed, in terms of psychopathology, Foucault’s7 work has been of significant importance in
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terms of devising a genealogy of psychiatry and, through this, in articulating a valuable notion of embodiment, even though its focus has been primarily on the body as ‘acted upon,’ rather than the ‘active body’ of Merleau-Ponty.8 The central argument being developed in this chapter – following on from Crossley9 – is that these different directions should not be seen as strictly demarcated, as the nature of our everyday embodied existences are made up of a mass of inter-related processes, some of which are ‘acted upon’ the body, and some that are acted by and through the body.10 As will be seen when working through the interview data, social processes are of utmost importance in terms of service users’ medication administration. Namely in terms of the psychiatric practices that first diagnose and then prescribe, and to a large extent control, treatment. In addition, though, service users are active bodies and in the data covered some of the embodied practices through which they manage medication will be highlighted. The data presented in this chapter is based upon twenty-two semi-structured interviews with service users. Access was gained to participants through a number of day centres and voluntary groups in and around the city of Nottingham, England. It was decided early on in the study that access would not be sought through formal mainstream psychiatric practices or mental hospital wards. The main reason for this was that the project did not want to be perceived to be allied to any psychiatric practice, as forms of objective clinical knowledge were not the main concern. It was deemed important that service users’ perceptions of the project were not that is was a formal psychiatric piece of research but rather coming from a social psychological background. Methodologically the data was analysed using discursive analysis, drawn from the area of research held under the umbrella term ‘discourse analysis.’ This area has created a great deal of interest in theoretical psychology and beyond in the last twenty years and remains an area of continued focus and progression. Whilst there have been attempts to define specific discourse analytic methods such as that held under the term ‘Foucauldian Discourse Analysis’ and ‘Discursive Psychology,’11 it remains an area that is best served by theoretical and empirical exploration and progression, rather than the demarcation of particular methods.12 In the present study a methodological strand of discursive analysis is used that allows for claims to be made about the actual embodied processes involved. The issue regarding discourse and the body has been an important one in discursive methods in recent years. Questions regarding whether claims can be made about issues beyond language have been prevalent since the ‘turn to language’ of the 1970s. These relate to debates regarding realism and relativism, and the extent to which things exist beyond the language with which they are spoken.13 However, the conceptual argument being developed here follows on from Radley14 and his argument for a valid analysis of embodied activity through discourse. This
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involves identifying analytic threads (or discourses) that run through the interviews, and using them to relate to wider embodied practices. Thus, claims are made about the kinds of epistemic practices that service users develop for and through the embodied process of medication. It is not the discursive constructs in and of themselves that are under focus, but through them an empirical concern can be satiated regarding embodied active processes. 3.
Somatic Management
Through the data analysed it can be seen that service users have a range of self-management techniques regarding the management of medication, which evidences the conceptual argument being made theorising service users as ‘active bodies.’ Consider the following example taken from a male service user (Mark15) who has been diagnosed schizophrenic and received anti-psychotic medication for a number of years: M: Well it did at the beginning but (1) it’s (1) my body’s (1) my body’s got used to the medication now (I: uh mm) cos I took it for th.. that long time (I: mm) (1) the tem (.) temazepam was helping me sleep in the (.) but (I: mm) cos it’s a muscle relaxer, relax (1) helps you (.) helps you (.) helps you to relax (.) do you know what I mean (I: mm) I was mixing it with drinks and that (I: mm) (2) and then (.) just to get that buzz to keep me on that level and (1) then they (.) just (.) they wrote me…..(lines 233-241) After being asked about the effectiveness of his medication, Mark states that it worked at the beginning but that his body has now got used to it. In other words, he has monitored and evaluated how his body reacts to the medication over time. This is conceptualised here as a form of ‘somatic management’ – a kind of acute sensitivity to the state of the body. This shows that he has constantly monitored the relation between the medication and his body ever since it was first prescribed. What is also interesting is the lack of talk of psychotic symptoms. He is not assessing the efficacy of the medication in terms of whether psychoses have persisted or not, but rather in terms of how it has made him feel, physically. That is why the notion of somatic management is key to understanding how this service user understands his condition. Mark goes on to demonstrate his practical knowledge in relation to medication, which can be seen to be different from the orthodox psychiatric definition. In this case he is talking about temazepam, a benzodiazepine that is used for a variety of purposes (for example as an anti-convulsant, and
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anti-anxiety drug), but Mark is not aware of this. Rather his practical knowledge is built around one aspect, namely its muscle-relaxing properties. This is evidenced by his inability to further articulate what the drug does, through the triple claim “helps you helps you helps you,” and then his attempt to draw appeal to a commonsense, shared understanding when he claims “you know what I mean,” thus attempting to draw on some knowledge of the drug that I may have. When this kind of formulation is seen in data, it usually indicates some kind of ‘trouble’ on the part of the respondent. Here the trouble is that Mark wants to emphasise his ‘practical knowledge’ of temazepam but then is unable to express that knowledge in terms which might be sufficiently persuasive. So he is thrown back to appealing to some notion of ‘common experience’ through stating “you know what I mean.” This highlights one of the problems service users face, that is an inability to translate their own ‘practical knowledge’ into the kind of knowledge that service providers (e.g. psychiatric nurses, psychiatrists etc) recognise as ‘valid’ or ‘meaningful.’ Mark then goes on to demonstrate that somatic self-management can involve periods of active experimentation with one’s body. This can involve mixing medication with other drugs, both prescription and nonprescription, to try to “keep me on that level.” Thus Mark has an idea of where he wants to be, namely “on that level,” and this corresponds to a particular somatic state from which Mark can attain an adequate level of functionality in terms of day-to-day life. It demonstrates how important issues of embodiment are to Mark and also how the development of active embodied practices are important in everyday management. For Mark, this involves a delicate balance of medication with other drugs (e.g. alcohol) to enact and subsequently maintain a bodily state that allows for adequate engagement with life on a day-to-day basis. A similar strategy can be seen in this extract: I: ho..how many times do you have to take it a day then? R: I’m supposed to take it (.) in the morning [I: mm] (.) and at night (1) but if I take it in the morning (1) two hours after I’ve taken it I’m fast asleep again [I: mm] for another three or four hours [I: mm] and I take it at night and I’m (1) passed out until (.) bloomin [I: mm] (1) ten o’clock in the morning [I: mm] so I take them all at night [I: mm] (.) have a decent sleep, when I wake up ¬| I stay awake ¬|….(lines 229-234) In this extract Rick describes his medication regimen, and details how it has changed from the original prescribed regimen. This is because Rick has developed his own regimen, based upon his phronetic experience of
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his prescribed regimen. He has worked out for himself that if he took his medication at the ‘right’ times, once in the morning and once at night, then his activity level was very low through the day. He had to go and sleep for “another three or four hours” only two hours after waking and taking morning medication. This disrupted his day and restricted his level of everyday activity level. Thus he experimented with medication by taking it all at night and found that when he does he can have a “decent sleep” and when he wakes up he “stays awake.” This ‘active experimentation’ is similar to that enacted by Mark, although for Rick this only involved his prescribed medication and not other drugs. Therefore, a different strategy is developed but one based upon the same underlying engagement in selfmanagement practices. Were Rick not to have developed his own regimen, his level of everyday activity would be much lower, consequently affecting his ability to function ‘normally.’ The term ‘somatic management’ is used here to conceptualise the multi-faceted ways that service users manage their bodies on a day-to-day basis. For service users this monitoring of body state is far more prevalent in day-to-day life than in a non-pathological population due to the many somatic effects of the medication service users take. Somatic monitoring becomes a far more complex practice for service users whose lives involve a dedicated medication regimen, often involving many different drugs with separate administration schedules. It should be stated that a ‘normal’ body state for service users does not necessarily correspond to a ‘normal’ body state in a non-pathological population. For many users they manage to maintain some level of activity from devising somatic self-management techniques but this relates to a far from perfect body state. They may well still feel quite physically unwell, but devise somatic practices that permit a level of body state that allows for some normal everyday functionality. 4.
Levels of Embodied Activity
The focus of this next section is on the effects of this agentic behaviour on wider experiences. What kind of experiences does service users’ activity allow and feed into? The following extract is taken from a female service user (Beatrice) who was diagnosed schizophrenic some years ago and has been prescribed medication ever since. She is talking about an episode where she had been experiencing severe muscle stiffness, and this had been commented on by her Community Psychiatric Nurse. says take two for now (2) and um (1) see how you go and I did (.) and I (.) I..I..I almost recovered straight away (1) well when I say straight away about (.) half an hour (I: mm) half an hour to an hour (.) I..I felt (.) really better you know (.) whereas before then I was (.) in bed all the time and (.) I only got up if I really needed to and
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Embodied Practices and Subjectivity in Psychopathology (.) even then I wasn’t feeling (.) great (.) I didn’t want to cook I didn’t want to clean (.) didn’t want to do anything (I: mm) but (.) this procyclidine (.) really helped and I thought oh I must be suffering from the side effects (I: mm) (.) of this drug (1) anyway I took two more the day after (.) then I I I (.) I’d completely recovered (I: mm) (2) and (.) I told my CPN who I saw, I see her on a Friday (.) it was the weekend (1) I think I rang her up on the Monday that was it (.) and told her oh this procycladine, you’ll have to get me some more (1)…..(lines 466-482)
In this extract there is further evidence of an acute sensitivity to the ongoing body state. This can even form a ‘hyper-vigilance routine,’ in terms of monitoring one’s body down to very specific time periods. In the extract Beatrice’s somatic management is worked through at an hour-tohour level, even more specific then on a day-to-day basis. When she took the medication that was suggested as an aid to her stiffness, she monitored its efficacy immediately and was able to make decisions how it was working after half an hour to an hour. Self-management is key here. Beatrice was not advised to monitor the side effects of the medication immediately, rather she was advised to just “see how you go.” However, she actively undertook a self-management practice of analysing the effects it was having on her body straight away. This understanding of the practical knowledge service users build up, which forms the basis of their everyday self-management, leads us to consider another factor, namely, the different levels of activity of service users and the functionality that can be defined by one’s activity level. This extract shows that when the somatic management was not achieving an adequate body state, then the levels of embodied activity were low. Beatrice talks about being “in bed all the time,” “only got up if I really needed to,” “even then I wasn’t feeling (.) great (.) I didn’t want to cook I didn’t want to clean.” Thus it can be seen how unproductive and depressing such a low level of activity can be. There is, of course, quite a non-pathological aspect to this description. This would be mentally distressing to anyone who was unable to get out of bed because they were feeling physically so bad, and were consequently unable to even maintain a modicum of domestic duties. This aspect of functionality of activity level can be seen to be crucially linked to somatic management. What Beatrice feels she can do is intimately related to her understanding of what her medication is doing to her, which she is monitoring and evaluating almost continuously, and subsequently develops and maintains selfdevised management strategies. This illustrates not only that service users develop and exist as embodied actors regarding their medication, but also underlines how
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important this is at times. Were Beatrice not to actively seek and develop her own epistemic practices, then she may not have discovered the root cause of her pain, which would have meant a prolonged stay in bed. Instead, she is able to recover quickly, which in turn vastly improves her mental, as well as physical well being. It allows her to re-engage with ‘normal’ life, and perform to a far more adequate level that, were she not to take an active role in management of her medication, she would be unable to do. 5.
Social Geographies of Mental Health
In the United Kingdom there has been a move in mental health care from existing predominantly in the form of mental hospitals and institutions to ‘care in the community.’ Large numbers of mental hospitals have been closed down and the limited environment they provided service users has altered substantially. Mental wards provided limited ‘spaces’ in which service users’ everyday lives were incorporated. For instance, most service users would sit in a common area in a ward with a television and games during the daytime. Common areas usually had dormitory style sleeping rooms adjacent, meaning that the majority of service users’ dayto-day existence revolved around very limited space. This has changed substantially in the last ten to fifteen years, with the majority of service users who were cared for in mental hospital wards having been ‘released’ into community settings, deemed to provide a more positive and effective care framework by government policy. This has proved a major challenge, both to service providers and to users, in terms of adapting to a different physical environment within which to cope and treat mental health difficulties. Whereas mental wards had their own functionality and provided limited ‘ways-of-being’ for users, community settings provide a vastly enlarged geographical and material environment in which to exist. Much research has focused on the functionality of mental hospitals16 and the ‘ways of being’ they afforded users. The same level of enquiry into ‘care in the community’ has not occurred empirically, and this is one of the reasons it is deemed important here. Thus, the central focus on embodiment in this chapter does not concern itself purely with service users’ relationships with their medication but also with forms of embodiment in the social spaces in which users exist. The term ‘social space’ was first used by Bourdieu17 referring to the geographical and material locations that we exist within, and with the underlying assumption that all locations are ‘social.’ This conceptualisation is drawn upon here, with the focus of this section on the kinds of social spaces that service users exist within and the nature of the embodied ways of being that these spaces enable. This will provide insight into and understanding of the subjective embodied experience of service users, on which their everyday management is based. Subjectivity here is conceptualised as forms of ‘shared sub-
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jectivities,’ as it is argued that the ways of being afforded service users by the social spaces they exist within are not individually specific, but rather operate as more general patterns of embodiment. The final extract then, demonstrates how active somatic management based on practical knowledge goes hand-in-hand with the day-to-day places where service users typically spend their time. There is indeed a great deal of rich ecological information in the interviews that is very important in terms of users’ everyday management. For example, when talking about the somatic effects of medication, Ben demonstrates a good practical knowledge of his medication. Added to this is detail of his selfmanagement, when he states that he has to lie down and sleep to alleviate the tiredness that can be so restrictive. I: so you’ve never had any side effects (.) but well (.) apart from when you (.) you’ve stopped taking them have you? B: e::r I get tired (.) a lot (1) like (.) I’ll be doing something in the middle of the day (.) and I’ll suddenly get tired (1) and then I’ll have a lay down (I: mm) (.) I’ll get up (.) and I’ll still feel tired (I: mm) (1) so (4) (I: mm) but my CPN says (.) the main thing to do when you’re feeling tired is do more (I: mm) cos the more I do (.) the better I’ll sleep at night (I: mm) (1) cos I don’t sleep very well either (I: mm) (1) I’m up till like three four in the morning (I: mm) and then I just stay in bed till about eleven twelve so (I: mm) (2) the more I do (1) that’s why it helps coming here you know (I: mm) it wears me out (I: mm) so I get some good sleep (I: mm) (3) and it’s good to get out the house as well (2) instead of being stuck in all the time (I: mm) (3) and plus you’ve (.) you know I think th..(.) I achieve something by coming here (I: mm) (.) an..and I’m learning every day (I: mm) (3) and the people what come here are really nice (I: mm) (1) and knowing that they’ve got similar sort of problems (I: mm) (.) you can relate to them…..(lines 301-323) In the extract what becomes apparent is the importance of activity levels and the relationship between somatic management and location. This importance comes from the notion of productive social locations. The extract suggests how productive social locations can be – in this case the local day centre visited – and thus how important somatic management becomes in terms of maintaining a level of activity that will allow for these kinds of places to be attended. Ben states that he achieves something, is learning
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things every day and additionally is able to maintain and build social relations with other people by attending and actively taking part in the workshops run by the day centre. Somatic management, then, is key to maintaining a level of embodied activity that will allow for productive locations to be attended. By recognising the effect his medication has on his body, namely the tiredness, Ben is able to maintain a strategy for alleviating this that produces a body state from which he can engage with and attend the locations that are beneficial to him. This then highlights the inter-relatedness of the embodied processes that form service users’ lives. As we have seen, much of their everyday management is grounded in individual embodied subjectivity, in terms of the relations and management of medication regimens. Service users’ somatic practices link into forms of activity and the social spaces available to them to spend their time. All of these things are, of course, key to improving general mental well-being, and highlight the importance of somatic management to the day-to-day living with this condition. What emerges from the data covered is how service users operate as embodied actors in the social worlds they exist within. This is a very embodied experience as the importance of relating and making sense of one’s body is paramount to service users. Whilst the underlying phenomenological argument here is that sense is made of experience through embodied activity, in the case of psychopathology it can be seen how important this is. Namely, that day-by-day, and even hour-by-hour on some occasions, service users’ embodied activity is a real ‘live’ issue to them. This is due to the somatic effects of the medication that make the body so salient to service users. As previously mentioned, it is not the focus here to develop a biomedical understanding of the medication. What is important is to gain an understanding of service users own practical knowledge of their somatic medication experience, as this forms the basis of everyday activity. This provides insight into a kind of ‘knowledge from within’ psychopathology; that is what it ‘feels’ like to live within the overarching objective framework of psychiatric knowledge. As previously mentioned, so much psychopathological understanding comes from mainstream psychiatry, the data analysed in this study evidences how important the selfmanagement techniques of somatic management, hyper-vigilance, and living in the complex ‘space’ of service use are as part of the subjective embodied understanding of service users’ everyday lives. This chapter has served to put some meat on to the bones of embodiment theory in social psychology and surrounding disciplines and, in addition, to gain insight into some of the issues facing service users’ everyday experiences. Although their lives are heavily influenced by the social practices of mainstream psychiatry, it has been shown how important a conceptualisation of service users as ‘active bodies’ is in terms of highlighting some of the epistemic practices they develop in relation to their medication. Thus, even though the influence of the body as ‘acted
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upon’ is a major one, it is not all encompassing, as service users still develop their own self-management strategies. Indeed, the development of such strategies can be important to enable and maintain a level of bodily activity that improves the mental as well as physical state. Beatrice demonstrated how valuable it is to just be able to maintain a level of basic functionality. Additionally, we have seen that enacting a level of somatic state that allows for productive spaces to be inhabited and visited is centrally important too. This is due to the kinds of embodied active behaviour that they in turn produce and facilitate. For instance, it was seen how Ben was able to physically make things and develop a greater sense of being an active body through his participation in the local day centre workshop. These kinds of active engagement in life and self-developed embodied practices are crucially important to service users, and show both the importance of focusing on medication, in terms of making sure it is not too somatically debilitating that service users cannot actively partake in life. In addition, it is important that service users have places and social spaces to go which enable and facilitate further activity that can create greater sense of users’ own active bodiness. Skills can then be acquired that allow for service users to potentially gain employment, and the subsequent greater sense of control and agency over their lives that this would bring. A notion of the active body is crucial, both conceptually and as part of service users’ everyday experiences.
Notes 1
Any reference to the diagnosis schizophrenia will be placed in single inverted commas. This is in recognition of the contested nature of the classification. 2 For example, Larry Davidson, Living Outside Mental Illness. (New York University Press: New York, 2003), and A Rogers, J. C. Day, B Williams, F Randall, P Wood, D Healy, and R P Bentall, (1998), ‘The Meaning and Management of Neuroleptic Medication: A study of patients with a diagnosis of schizophrenia,’ Social Science and Medicine 47, 9: 13131323. 3 For example, Chris Shilling, The Body and Social Theory: 2nd Edition. (London: Sage, 2003), and Alan Radley, The Body and Social Psychology. (New York: Springer, 1991), and Henderikus J. Stam, (Ed.), The Body and Psychology.(London: Sage, 1998). 4 For example, Bryan Turner, The Body and Society. (Oxford: Basil Blackwell, 1984), and Michel Foucault, The Archaeology of Knowledge. (London: Tavistock, 1974), and Arthur Frank, ‘For a sociology of the body: an analytic review’, in The Body: Social Process and Cultural Theory, eds Mike Featherstone, Mike Hepworth and Bryan Turner,
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(London: Sage, 1991), and Erving Goffman, Gender Advertisements. (London: Macmillan, 1979). 5 Maurice Merleau-Ponty, The Phenomenology of Perception. (London: Routledge and Kegan Paul, 1962). 6 Nick Crossly, ‘Body-Subject/Body-Power: Agency, Inscription and Control in Foucault and Merleau-Ponty’, Body and Society 2, 2 (1996): 99-116. 7 Michel Foucault, Madness and Civilisation. (London: Tavistock, 1967). 8 Crossley, 99. 9 Crossley, 99. 10 See Ian Burkitt, Bodies of thought, (London: Sage, 1999). 11 Carla Willig, Introducing Qualitative Research in Psychology: Adventures in theory and method. (Buckingham, Open University Press, 2001). 12 Erica Burman, ‘Discourse analysis means analysing discourse: some comments on Antaki, Billig, Edwards and Potter’s “Discourse analysis means doing analysis: a critique of six analytic shortcomings,”’ Discourse Analysis Online, 17 May 2004, (16 September 2004).
13 See Ian Parker, ‘Against Relativism in Psychology, on Balance’, History of the Human Sciences 12, 4 (1999a): 61-78, and Ian Parker, ‘The Quintessentially Academic Position’, History of the Human Sciences 12, 4 (1999b): 89-91, and Jonathan Potter et al. ‘The Parker-complex’, History of the Human Sciences 12, 4 (1999): 79-88. 14 Alan Radley, ‘Flirting’, in Discourse, the Body, and Identity, ed. by Justine Coupland and Richard Gwyn, (New York: Palgrave, 2003). 15 All names used are pseudonyms. 16 Erving Goffman, Asylums. (London: Penguin, 1968). 17 Pierre Bourdieu, Outline of a Theory of Practice. (Cambridge: Cambridge University Press, 1977).
Bibliography Bourdieu, Pierre. Outline of a Theory of Practice. Cambridge: Cambridge University Press, 1997. Burkitt, Ian. Bodies of thought. London: Sage, 1999. Burman, Erica. ‘Discourse analysis means analysing discourse: some comments on Antaki, Billig, Edwards and Potter’s “Discourse analysis means doing analysis: a critique of six analytic shortcomings,”’ Discourse Analysis Online. 17 May 2004.
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(16 September 2004). Crossly, Nick. ‘Body-Subject/Body-Power: Agency, Inscription and Control in Foucault and Merleau-Ponty’, Body and Society 2, 2 (1996): 99-116. Davidson, Larry. Living Outside Mental Illness. New York University Press: New York, 2003. Foucault, Michel. Madness and Civilisation. London: Tavistock, 1967. Foucault, Michel. The Archaeology of Knowledge. London: Tavistock, 1974. Frank, Arthur. ‘For a sociology of the body: an analytic review’, in The Body: Social Process and Cultural Theory edited by Mike Featherstone, Mike Hepworth and Bryan Turner. London: Sage, 1991. Goffman, Erving. Asylums. London: Penguin, 1968. Goffman, Erving. Gender Advertisements. London: Macmillan, 1979. Merleau-Ponty, Maurice. The Phenomenology of Perception. London: Routledge and Kegan Paul, 1962. Parker, Ian. ‘Against Relativism in Psychology, on Balance’, History of the Human Sciences 12, 4 (1999a): 61-78. Parker, Ian. ‘The Quintessentially Academic Position’, History of the Human Sciences 12, 4 (1999b): 89-91. Potter, Jonathan. Derek Edwards, and Malcolm Ashmore, ‘The Parkercomplex’, History of the Human Sciences 12, 4 (1999): 79-88. Radley, Alan. The Body and Social Psychology. New York: Springer, 1991. Radley, Alan. ‘Flirting’, in Discourse, the Body, and Identity, edited by Justine Coupland and Richard Gwyn, New York: Palgrave, 2003. Rogers, A., Day, J. C., Williams, B., Randall, F., Wood, P., Healy, D., and Bentall, R. P., ‘The Meaning and Management of Neuroleptic Medication: A study of patients with a diagnosis of schizophrenia,’ Social Science and Medicine 47, 9 (1998): 1313-1323.
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Shilling, Chris. The Body and Social Theory: 2nd Edition. London: Sage, 2003. Stam, Henderikus. J., (Ed.), The Body and Psychology. London: Sage, 1998. Turner, Bryan. The Body and Society. Oxford: Basil Blackwell, 1984 Willig, Carla. Introducing Qualitative Research in Psychology: Adventures in theory and method. Buckingham, Open University Press, 2001.
Note on Contributor Ian Tucker is a lecturer in psychology at the University College Northampton, Northampton, UK. He has previously published research on Chronic Fatigue Syndrome, and is currently interested in issues of embodiment, discourse analysis, and theoretical psychology more generally.
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Getting By: The Lived Experience of Patients with Cystic Fibrosis and Their Carers of Waiting for Lung Transplant Kath MacDonald Abstract This study uses a qualitative exploratory approach to examine how patients with Cystic Fibrosis (CF) and their carers cope with the rigours of chronic illness and life on a transplant waiting list. Eight patients with CF, four awaiting transplant and four who had been transplanted within the previous three years, and five of their carers, were asked to recount their experiences using a semi-structured interview technique. Four themes emerged from the interview data: Displacement, Disorder, Life in Limbo and Readjustment to wellness. Issues concerning emotional support, control, and “buying time” are all seen as important in the waiting process. Coping with chronic illness while waiting for transplant involves a variety of adaptive coping strategies. Keywords: Cystic fibrosis, transplant, coping, chronic illness 1.
Introduction
Cystic fibrosis (CF) is a life threatening inherited disorder that presently affects 7500 sufferers in the United Kingdom.1 Among the effects of the disease are repeated respiratory infections and digestive problems. With recent advances in treatment, such as aggressive nutrition, effective antibiotics and physiotherapy, fifty percent of CF patients survive to 31 years in the United Kingdom.2 It is estimated that median life expectancy for those born in 1990 will reach forty years,3 however, the great majority of those who die with CF, do so as a result of pulmonary disease.4 Despite global collaborative trials in gene therapy,5 we have entered the 21st century with no immediate prospects of eradicating this debilitating disease. The focus therefore continues on the development of existing treatments, whilst those with end-stage disease, look towards other solutions such as lung or liver transplantation. With waiting times in the region of six months to greater than two years as a result of donor shortages, reports of deaths in up to 40% of those currently waiting, 6 and survival rates of less than 50% to five years, it is clear that transplant is not a panacea.7 For the moment, transplantation is a palliative rather than curative treatment, which will still result in a shortened life span for patients. The transplant process is long, arduous,
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and stress-filled, for patients, their families and friends, and involves a process of identifying sufferers as potential transplant recipients, referral to a transplant centre, and if accepted, a period of waiting, which has been described as “life on hold.”8 The researcher worked as a CF nurse specialist for twelve years and was particularly interested in patients’ and families experiences of transplant. Nursing these chronically ill patients through periods of acute illness filled with periods of hope, despair and then hope again can be challenging. Trying to “buy time” until the beeper goes off, whilst preserving some sort of quality of life and dignity, caused the researcher to reflect upon the wide ranging coping strategies which are required to live life whilst on a transplant waiting list. Furthermore a review of the literature revealed that whilst much has been written on coping and transplant, there is a dearth of CF-specific, transplant-related exploratory research. This study therefore explores the lived experience of cystic fibrosis sufferers and their carers of waiting for lung transplant and was undertaken as part of a Masters degree in Nursing. 2.
Aims Of The Study
The study objectives were twofold: First, to examine the lived experience of patients with cystic fibrosis, and their carers, in coping with the rigours of chronic illness and life on a transplant waiting list. Second, the project wanted to determine the extent of support offered by health care professionals during the process of referral, assessment, and waiting for transplant. 3.
Methods
A. Design This study uses an in depth qualitative approach to explore how patients with CF and their carers cope with the process of transplant, through the use of semi-structured interview. The justification for the semi-structured interview was to allow patients a degree of freedom in recounting their experiences of waiting for transplant, whilst at the same time addressing issues which, after review of the literature, the researcher felt to be of importance. B. Instruments Outcome measures of Forced Expiratory Volume in one second (FEV1), expressed as a percentage of that predicted for a “healthy” person of the same age and height were recorded. Body Mass Index (BMI) was used to determine the nutritional status of subjects. These indicators are
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used routinely in CF management to alert clinicians to the severity of physical health. A ten point Likert scale was used to measure patients’ perceived severity of illness at time of referral, immediately pre operatively for those who were transplanted, and for those still waiting, at the time of interview. The attending physician was also asked to rate the patients in the same way. This was to explore whether patients and their physician perceived severity of illness differently as reported in the literature. 9 C. Sample Eight patients with cystic fibrosis, (five male) and five carers (one male) took part in the study. Patients’ ages ranged from 19-40 years, and transplant waiting times from two to forty months. The four patients awaiting transplant, had lung function below twenty per cent predicted. This meant long stays in hospital for intensive medical and nursing care. The four post-transplant patients were all in reasonable health and were seen at regular intervals in the out-patient clinic. Of the five carers, four were parents and one was the partner of a young woman in her thirties, (age range 38-70). Carer five was the only carer with a CF sufferer still awaiting transplant; the other four carers had all been through the transplant process. 4.
Ethical considerations
Ethical approval for the study was sought from Lothian Research Ethics Committee (LREC) in Edinburgh. As a CF nurse, the researcher had worked closely over a period of years with these families, It was important therefore, that they felt neither compelled to participate in the study due to obligation, or, felt that their care would be compromised should they decline to participate. A. Procedure Each subject was interviewed once. Interviews lasted between twenty five and ninety five minutes. The interviews were audio taped, and took place either in hospital; in the patient’s single room in the ward, or at the patient/carers home. Field notes were taken after each interview to enhance credibility. This would also create an ‘audit trail’ for the analysis. B. Bracketing Putting asides one’s own preconceptions is said to enhance rigour in explorative studies.10 This was attempted through a process of reflection with a peer with years of research experience.
252 5.
Getting By Data analysis
The qualitative data from the audio tapes were transcribed verbatim and then subjected to content analysis. Patterns, keywords and phrases were transcribed onto cards. Similar quotes were placed under headings and meanings were formulated from significant statements. Thirty eight headings emerged which were merged to form eleven sub themes. Finally, four main themes emerged. To help enhance credibility, an independent nurse researcher was asked to review the transcripts and field notes. Findings were largely in concordance with the principle investigator and there was agreement regarding the emergent themes. In addition, one subject was asked to review the principle investigator’s analysis of his transcript. Again, there was concordance between the subject and the investigator. 6.
Results
Six out of eight patients perceived themselves to be in better health at the time of referral than their physician (not significant), whilst two out of eight rated themselves the same as the physician. In contrast, six out of eight patients rated themselves of equal severity to the physician’s rating at time of interview or for those post-transplant, in the period immediately pre-transplant 7.
Interview results
Four main themes emerged from the interview data: displacement, disorder, life in limbo and adjustment to wellness. These themes run parallel with the phases in the transplant process of referral, assessment, acceptance onto the waiting list and the post-transplant period. The concept of uncertainty prevails throughout all four phases. Each main theme, discussed below, has one or more sub theme attached to it (See fig 1). A. Displacement Displacement refers to the view that patients have of themselves as being “fine,” of going about their daily business, and getting on with their lives in their own normal way. The introduction of discussions regarding referral for transplant displaces this status quo of “normal life.” Patients, and to some extent carers, up to that point, whilst considering that transplant may be something that will be required in the future, are not usually prepared for the conversation when it is raised. This is often despite cues from health professionals of a deteriorating picture over time:
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“normal” perceptions of health therefore, are displaced, resulting in shock and anger. “I was shocked that he had even thought, how dare they say I was as bad, that I have only got so long to live or something like that” (Patient 6) “I don’t think my health is, it is no’ dropping down, it’s me getting lazy” (Patient 8) “I was angry, I thought it was too soon” (Patient 3) Displacement of this altered perception of well-being leads to reactions of surprise, anger, and unrealistic comparison of self to their peer group. This is supported by statements such as “I had seen other people in the clinic and they looked more poorly than I did” (Patient 1) and “I was comparing myself to other CFs, I am no better but about the same” (Patient 2). Two patients who had been transplanted three years ago and one year ago, respectively, appeared more able to reflect on the coping strategies of healthy denial/downward comparison. “You don’t see how poorly you are because you are so used to being poorly” (Patient 1) and “You don’t know how bad you are getting. I have got slowly worse over the years, I wasn’t aware how bad it was getting, I just accepted that it was my way of life” (Patient 7). Carers expressed feeling of relief and joy as opposed to shock and anger, when transplant was mentioned, suggesting that they may have been more ready for the news than their loved ones. However this was tempered by comments such as “you wouldn’t have thought he was as far down the line as that” (Carer 2), “You hoped they would say it (transplant) was for the future” (Carer 3) and “It’s a funny thing, she was so ill, and yet I never thought of her as an invalid” (Carer 5) B. Disorder This refers to the disordered nature of emotions that subjects felt through the second stage of the transplant process. Once the initial discussion regarding referral has taken place, patients are given time to go away, digest the news and discuss issues with their families. Further discussions take place and when the patient feels ready, a referral letter is sent to the transplant centre. The patient and family then receive a letter asking them to attend the transplant centre, usually within three months of the initial referral. The transplant centre is a three to four hour drive away. Patients and families are expected to stay for four days during which time
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Getting By Themes
Displacement
Disorder
Life in limbo
Readjustment to wellness
Acceptance of failing health Buying time Getting by Optimism v fate Planning for the future Fears about missing the boat
Guilt v gratitude
Sub-themes
Altered perception of self
Referral
Need for Control Trust in others Need for support
Assessment
Acceptance onto waiting list
Post Transplant
Uncertainty
Fig 1: A Conceptual model of the lived experience of transplantation.
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the patient is subjected to a variety of tests, and introduced to the transplant team. On the fourth day, all the information is reviewed and a decision made to accept or reject the patient for active transplant. There is huge uncertainty experienced at this stage by both patients and their carers coupled with extreme highs and lows of emotions. Emotions expressed include fear, hope, anxiety, excitement and relief. Illustrative quotations include: “it was an exciting feeling, it was like, God, I’m going on the transplant list, I’m going to be normal like everyone else” (Patient 1) “There is fear, what the hell is going to happen, you didn’t ken what to do- uncertainty” (Patient 6) “I was thinking I was too healthy, but I wasn’t wanting to be turned down.” (Patient 2) “Terribly glad, and a lightning of feelings, a lifting-, we are on a pathway here.” (Carer 5) “We were both pleased but frightened, and then it was like waiting for a time bomb to go off.” (Carer 4) C. Life in Limbo This third emergent theme, life in limbo, follows an individual’s acceptance onto the active transplant list and refers to the period of waiting until the beeper goes off and transplant takes place, or alternatively, death occurs. When providing the findings of the study to one of the recipients to ensure rigour and validity, the patient summed up “life in limbo” commenting “If I was a video recorder, I’d be on pause at the moment. I’m not really living, I’m just getting by” (Patient 5). Within the theme of “life in limbo,” there were five sub categories. These were acceptance of failing health, buying time, getting by, optimism versus fate, planning for the future and fears about missing the boat. Two of these will be discussed, buying time and missing the boat. The need to try and keep well, to avoid the next infection, to maximise the treatments, in the face of failing health and in the hope that the bleeper will go off has been labelled “buying time.” Patients and carers take action to optimise what little health is left, e.g. by being vigilant for early signs of further deterioration, or by keeping people who may be at risk of causing infection away from their loved one. A caregiver highlighted how “We picked the biscuits that had the most calories in them, I would try and find things that really appealed” (Carer 5), while a
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patient indicated that “I concentrate on my weight, I am eating better” (Patient 5). Carers sometimes had to take on the role of “enforcer” or resort to bullying in order to achieve adherence to treatment and therefore buy more time. “He was more pushy than me, I was ‘oh I can’t be bothered.’ He was ‘get up on that bench!’” (Patient 1). A carer recounted that “We bullied him a lot, you just had to keep him going and not give up” (Carer 3). Another patient contrasted managing alone with [his or her?] experience living with [his or her] mother. “It was more difficult when you are staying on your own, when I was staying with my mum she made sure I did it [physiotherapy]” (Patient 2). False alarms are described in the sub theme of missing the boat. Unlike other forms of organ transplant, the donor lungs must be in pristine condition in order to be transplanted. Because of the critical element of time in the transplant process, the recipient is usually called to the transplant centre before the donor lungs are removed. By the time the state of the donor lungs is known, the waiting recipient may be ready and prepared for the operation. Imagine the feelings of disappointment that ensue if the donor lungs are found to be unsuitable. There is concern that there may not be another chance. The experience of dashed expectations is highlighted in the following illustrative quotations: “The bottom dropped out of his world, he was so sure he was going the second time” (Carer 3). “It felt as if someone had ripped the insides out of me” (Patient 4). “It was a let down, but eh … there is nothing you can do, you can’t be angry with anybody, you just have to accept” (Patient 7). “ … and he (transplant co-ordinator) said you are not going to get your transplant, and I thought that was a final thing and he said your time will come, and I thought, oh it’s not the end, oh it’s not the end then” (Carer 5). “I can remember her saying ‘well there might not be another one’ and for days she was really very low” (Carer 4) D. Re-adjustment to wellness The fourth theme is specific to those patients who were post transplant. Four of the patients interviewed had been transplanted between three and thirty four months ago. Their experiences were vastly different. When asked if the future had turned out for them as they predicted, three
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out of four patients replied that things had turned out better than they had thought: “It is ten times better” (Patient 4); “Now after my transplant I can do a lot more” (Patient 1); “An awful lot better than I could have imagined … 100% better” (Patient 7). Whilst the initial reaction by patients was of satisfaction with their new life, it becomes apparent over the course of the interview, that there are difficulties of adjustment, which perhaps had not been considered before transplantation. Life is not completely normal as dreamt about before transplant, but is continues to be full of stresses and strains. The final sub-theme, “guilt versus gratitude,” pertains to the ways patients and carers justify their continued struggle to adjust to this new life. There are thoughts of being given a second chance and the need not to waste that. There is also guilt at feeling aggrieved when things are not going according to plan, as the following quotations demonstrate. “You start to get kind of depressed, you think Christ why am I doing all that? Ye ken it is going to be like that for the rest of the time…” (Patient 6). “You couldn’t imagine ever a down side (before) so it was a bit of a surprise when I started feeling like that and then I felt guilty about feeling that way, I know I shouldn’t be feeling guilty, I should be grateful. It is adjusting to normal life. That has probably been more difficult than anything” (Patient 7). “I am always trying to prove to people, especially my donor family their lungs haven’t gone to waste, that I’m really looking after them…. I get depressions so low that if it wasn’t for the fact that I had someone else’s lungs inside me I could quite easily do myself in” (Patient 1). 8.
Discussion
A. Perception of illness/health Most of this group of patients perceive themselves to be healthier than their attending physician at the time of referral for transplant. However, perceptions of health and illness match up more closely to the physician during the waiting phase, as the disease progresses. It is difficult to ascertain at what stage in the process reality “kicks in.” The literature supports this finding as denial or healthy avoidance can be seen as an effective coping strategy in the context of chronic illness,11 providing it is not at a cost to treatment.12 What are the implications of these findings for practice? If avoidance is a healthy coping mechanism in chronic illness, then perhaps taking this away from patients may do more harm than good
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in the long term. What may be more important is that health professionals recognise that patient’s perception of their illness may be different from theirs and, instead of being surprised at the reaction of patients during the transplant discussion, be aware that this reaction is perhaps not an unusual one. Greater understanding of patient’s coping strategies may help in their overall management, not just of the transplant process but in other areas such as adherence to treatment. B. Support It would appear from the interviews that respondent’s feel supported enough by their referring centre. It should be noted that the researcher is a member of staff at the referring centre and patients may have felt inhibited about being critical about this group. However, patients and carers would like more contact at more regular intervals from their transplant centre. This will be taken forward to the transplant centre. Subjects viewed emotional support with particular importance; however practical support became increasingly important with disease progression. This has implications for health care providers in what they can offer in terms of both types of support. With regard to emotional support, professionals should be aware of the need to allow both patients and carers the opportunity to vent emotions, especially if they do not feel able to do so in front of each other. Practical support should be offered in terms of nursing care, and practical home help to ease the burden on carers. Furthermore, additional emotional and practical support should be offered following episodes of false alarms, which patients found both emotionally draining and caused deterioration in physical health in some cases. C. Re-adjustment to wellness Difficulties adjusting post-transplant are documented in the literature.13 One model of illness14 suggests that at termination of illness through either death or transplant, as in this study, that mastery is achieved. Perhaps mastery is not the right term to use, as there is continued adjustment and anxiety post transplant. Only one of the post transplant subjects appears to have gained this level of mastery in the researcher’s opinion, as evidenced by her return to work, starting a new relationship, going on holiday and generally appearing to readjust to a “normal life.” However, even she continues to have occasional problems related to her immunosuppression. In addition it could be argued that because of the multifaceted nature of CF, transplant is only one answer to one part of the disease; problems with other symptoms not related to lung disease continue, therefore this group may behave differently to patients who have only lung or heart disease. Furthermore, the sample size was small, and perhaps interviewing subjects who were further out in terms of
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years post-transplant would have revealed different findings. However, the present study has important implications for future management of this group of patients and suggests that this group require as much emotional support after transplant as they did before. In addition, practical support in terms of benefits help, and back to work courses may have an important effect on building self- esteem. 9.
Limitations of the study
This study has reflected only one snapshot in time and it would have been more interesting and perhaps more valid to ascertain if people cope differently over time, therefore a longitudinal study may have been more revealing. Secondly, this study used a semi-structured interview to allow subjects to tell their stories. Using an unstructured technique may have produced data that was totally unconstrained by any preconceptions that the researcher may have had prior to starting out. Asking respondents to recall their perceived illness score when they were awaiting transplant, may have been unrealistic, as memories and perceptions change over time, and the results therefore should be viewed with caution. 10.
Conclusion
This study has attempted to describe the lived experience of patients with CF and their carers, of the transplant process: through referral, assessment, waiting, and for some, life after transplant, using semi-structured interviews. Those professionals involved in caring for these patients believe they have some insight into these people’s lives. For the researcher, this has been a humbling and insightful experience, but most of all it has led to the realisation that what the health professionals see is the tip of the iceberg. Further research is required to allow us greater insight into the difficulties families’ face, this may then help us to be more sensitive and supportive to their needs.
Notes 1
Cystic Fibrosis Trust, Genetics (Bromley: CF Tust, 2000). Margaret E Hodson, “Respiratory system: Adults,” in Cystic Fibrosis, ed. Margaret E Hodson and Duncan M Geddes (London: Arnold, 2000), pp. 218-242. 3 Stuart Elborn et al. “Cystic fibrosis: current survival and population estimates in the year 2000,” Thorax, 46 (1991): 881-5. 4 Niels Hoiby and Birgitte Frederiksen, “Microbiology of cystic fibrosis,” in Cystic Fibrosis, ed. Margaret E Hodson and Duncan M Geddes (London: Arnold, 2000), pp. 83-108. 2
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Early results showed poor uptake of the gene by normal cells, and associated side effects from the gene delivery system. See Eric W Alton et al. “Non invasive liposome-mediated gene delivery can correct the ion transport defect in cystic fibrosis mutant mice”, Nature Genetics, 5, 2 (1993): 135-42; Ronald Crystal et al. “Administration of an adenovirus containing the human CFTR cDNA to the respiratory tract of individuals with cystic fibrosis”, Nature Genetics, 8, 1 (1994): 42-51; and David J Porteous et al. “Evidence for safety and efficacy of DOTAP Cationic liposome mediated CFTR gene transfer to the nasal epithelium of patients with cystic fibrosis”, Gene Therapy, 4, 3 (1997): 210-8. 6 Jeffrey Hosenpud et al. “Effect of diagnosis on survival benefit of lung transplantation for end-stage lung disease, The Lancet, 351, 9095 (1998): 24-7. 7 Nancy Brager and Mary Goodwin (2001) “Transplantation: new hope and new dilemmas” in Psychosocial aspects of Cystic Fibrosis, ed. Myra Bluebond-Langer , Brian Lask and Denise Angst (London: Arnold, 2001), pp. 426-450. 8 Marcy E Saxe-Braithwaite and Jacqueline S Chapman, “Life on hold: The experience of the support person involved in a lung transplant program”, Canadian Journal of Nursing Research, 24, 3 (1992): 69-80. 9 These studies showed that patients and carers downgrade the perceived severity of illness as a coping mechanism. See Karen Lowton, “Life on a slippery slope: perceptions of health in adults with cystic fibrosis”, Sociology of Health and Illness, 25, 4 (2003): 289-319; Jane Abbot et al. “Different perceptions of disease severity and self care between patients with cystic fibrosis, their close companions and physician”, Thorax, 50 (1995): 794-6; and Wolfgang F Kuhn et al. “Emotional adjustment to cardiac transplantation”, General Hospital Psychiatry, 10 (1998): 108113. 10 Martin Heidegger , ed. Basic writings from “Being and time“ (1927) to “The Task of thinking (1964)” (London: Routledge, 1993). 11 See Kuhn, 108; and Richard S Lazarus, “Evolution of a model of stress, coping and discrete emotions” in Handbook of stress, coping and health, ed. Virginia H Rice (Thousand Oaks, California; Sage, 2000), pp. 195-22. 12 See Lowton, 289; and Jane Abbot et al. “Health perceptions and treatment adherence in adults with cystic fibrosis”, Thorax, 81 (1996): 123-8. 13 Merle H Mishel and Carolyn L Murdaugh, “Family adjustment to heart transplantation: Redesigning the dream”, Nursing Research, 36 (1997): 332-8. 14 Janice M Morse and Joy L Johnson, The Illness Experience (London: Sage, 1991).
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Bibliography Abbot Janice, Mary Dodd and Kevin Webb. “Different perceptions of disease severity and self care between patients with cystic fibrosis, their close companions and physician.” Thorax 50 (1995): 794-6. Abbot, Janice, Mary Dodd and Kevin Webb, “Health perceptions and treatment adherence in adults with cystic fibrosis.” Thorax 81 (1996): 1238. Alton, Eric W, Peter G Middleton, Natasha J Caplen, Stephen N Smith, Diana M Steel, et al. “Non invasive liposome-mediated gene delivery can correct the ion transport defect in cystic fibrosis mutant mice.” Nature Genetics 5 (2) (1993): 135-42. Brager, Nancy and Mary Goodwin. “Transplantation: new hope and new dilemmas” in Psychosocial aspects of Cystic Fibrosis, edited by Myra Bluebond-Langer, Bryan Lask and Denise Angst, 426-450. London: Arnold, 2001. Crystal, Ronald, Noel G McElvaney, Melissa A Rosenfield, Chin-Shyan Chu, Andrea Mastrangeli, et al. “Administration of an adenovirus containing the human CFTR cDNA to the respiratory tract of individuals with cystic fibrosis.” Nature Genetics 8 (1) (1994): 42-51. Cystic Fibrosis Trust. Genetics. Bromley: CF Trust, 2002. Elborn, J Stuart, Dennis J Shale, John R Britton. “Cystic fibrosis: current survival and population estimates in the year 2000.” Thorax 46 (1991): 881-5. Heidegger, Martin. Basic writings from “Being and time (1927)” to “The Task of thinking (1964)” Routledge: London, 1993. Hodson, Margaret E. “Respiratory system: Adults,” in Cystic Fibrosis, edited by Margaret E Hodson and Duncan M Geddes, 218-242. London: Arnold, 2000. Hoiby, Niels and Birgitte Frederiksen. “Microbiology of cystic fibrosis.” in Cystic Fibrosis, edited by Margaret E Hodson and Duncan M Geddes, 83-108. London: Arnold, 2000. Hosenpud Jeffrey,Leah E Bennett, Berkley M Keck, Eric B Edwards Richard J Novick “ Effect of diagnosis on survival benefit of lung
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transplantation for end –stage lung disease” The Lancet 351(9095) (1998): 24-7 Karen Lowton. “Life on a slippery slope: perceptions of health in adults with cystic fibrosis.” Sociology of Health and Illness 25 (4) (2003): 289319. Kuhn, Wolfgang F, Mary H Davis, Steven B Lippmann. “Emotional adjustment to cardiac transplantation.” General Hospital Psychiatry 10 (1988): 108-113. Lazarus, Richard S. “Evolution of a model of stress, coping and discrete emotions”, in Handbook of stress, coping and health, edited by Virginia H Rice, 195-222. Thousand Oaks, California: Sage, 2000. Marcy E Saxe-Braithwaite and Jacqueline S Chapman, “Life on hold: The experience of the support person involved in a lung transplant program.” Canadian Journal of Nursing Research Fall 24 (3) (1992): 69-80. Merle H Mishel and Carolyn L Murdaugh, “Family adjustment to heart transplantation: Redesigning the dream.” Nursing Research 36 (1987): 332-8. Morse Janice M and Joy L Johnson. The Illness Experience. London: Sage, 1991. Porteous, David J, Julia R Dorin, Gerry McLachlan, Hazel DavidsonSmith, Heather Davidson, et al. “Evidence for safety and efficacy of DOTAP Cationic liposome mediated CFTR gene transfer to the nasal epithelium of patients with cystic fibrosis.” Gene Therapy 4 (3) (1997): 210-8.
Note on Contributor Kath Macdonald R.N. Crit Care Cert. Dip Nursing, MSc. is currently a lecturer in Nursing on the BSc (Hons)Programme at Queen Margaret University College Edinburgh. This research was undertaken while she worked as a clinical Nurse Specialist in the Scottish Adult Cystic Fibrosis Service in Edinburgh.
Speaking About the Unspeakable: Cervical Screening in New Zealand Judith Macdonald Abstract This chapter deals with two governmental inquiries into medical disasters to do with cervical screening in New Zealand. It also looks at a qualitative study into women’s understandings of the cervical screening process. However, the central analytical focus is on discourse, especially the control of vocabulary and the use of speech and silence. In the medical encounter, there is the specialised vocabulary of anatomy and technology which belongs to the doctor but it is applied, in the case of cervical screening, to the bodies of women. This can lead to strategies of control and infantilisation by the doctors or of resistance and subversion by the women. Speech can be used to obfuscate and silence to communicate. Underlying both communication and miscommunication are prevailing ideologies of class and gender relations which affected the ethical dimensions of a medical study in the 1980s, discussions with women about their bodies in the early 1990s and the inutility of the National Cervical Screening Register which was revealed in 2001. Keywords: Cervical screening, discourse, governmental inquiries, New Zealand, power, research ethics, women.
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Introduction All the necessary scientific facts for saving most of the lost lives have been known for 20 years [i.e. since the mid-1960’s]…. [But] many with invasive cancer in the older age groups have never been screened at all; some do not know about the test, some do not know where to go for it and some do not have the vocabulary to ask for it. (Editorial in The Lancet) 1
Cervical screening is a preventative health measure. It consists of taking a scraping of cells from the cervix or opening of the uterus and having a cytologist read the cells to see if there are any abnormal findings. There are three grades of pre-cancerous lesions depending on how deeply into the tissue of the cervix the abnormal cells have gone. Regular screening can pick up cell changes at the earliest stage at which time there is virtually a 100% cure rate. If the pre-cancerous cells are not excised
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they will usually, but not always, turn into cancerous cells over a period of ten to fifteen years, on average. Cervical cancer erodes the cervix and may travel into the uterus and through to the bladder or bowel by which time the most radical surgery is required and chances of survival are diminished. This is the biomedical definition. However, there is also the socio-cultural perspective: people talking about and understanding the process at both personal and institutional levels. Cervical screening deals with the ‘hidden bits’ of women. Naming the hidden bits involves words that are difficult to speak out loud and there may be contestability over the naming, in that there are women’s words and doctors’ words. The italicised part of the quote above recognises problems with vocabulary. But this discussion goes further than the individual process of smear taking. Government and health board policies and practices underlie smear taking, and gender and power relations are also involved. If any elements of this cultural complex prove inadequate there may be obfuscation or silence because words cannot be found to speak about things that are unspeakable. This chapter is based on three very different episodes of collecting information about cervical screening in New Zealand over the last thirty years. In 1992 I carried out a qualitative research project on women’s knowledge of, and attitudes to, cervical screening for the Waikato Area Health Board. However, this research was bracketed by two major medical disasters to do with cervical screening. The first, in the 1980s, was what has come to be called ‘the unfortunate experiment at National Women’s Hospital.’ It resulted in a governmental inquiry. The second disaster arose out of inadequate cytological laboratory practices in Gisborne which were revealed in the late 1990s. It also resulted in a governmental inquiry. 2.
The Unfortunate Experiment at National Women’s Hospital – 1987
National Women’s Hospital (NWH) was built in 1964 in Auckland, the largest city in New Zealand. There was some opposition to combining obstetrics, which deals with childbirth, and gynaecology, which deals with problems in women’s reproductive area. It was suggested by Dr Doris Gordon, then head of NWH, that putting the two together pathologised women’s reproductive role. This was not an idle suggestion. The history of the medical treatment of women has been one which defined anything to do with female reproduction as problematic, dirty, likely to cause mental upsets and which demonstrated the need to control women who had a tendency to be peculiar or childish because of their hormones. However, the two specialisations were put together and the hospital also became a teaching hospital with links to the University of Auckland. This entailed a research function.
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The initial occurrence that led to this first inquiry was purely accidental. In the early 1980s, a woman who worked at the Auckland School of Community Medicine read a piece of research a statistician colleague was working on for some doctors at National Women’s Hospital. She mentioned it to a friend, freelance and feminist journalist Sandra Coney who read the paper when it was published. 2 The paper, like a lot of medical research designed for journal publication, was a summary of the findings with little on the methodology. It appeared to be the outcome of an experiment on women who had had abnormal cervical smears that had not been treated. The statistician involved calculated that the women in the experiment had developed “potentially fatal invasive cancer” at twenty-five times the rate of women treated conventionally and deaths had occurred in this group. 3 Coney discussed it with Phillida Bunkle, then a lecturer in Women’s Studies at Victoria University of Wellington. The two women spoke to the doctors who had written the paper and to some women who had had gynaecological problems referred to NWH and they discovered that some unethical research had been carried on for years at NWH. Those few sentences disguise months of detective work, obfuscation from doctors at the hospital, incomprehension from patients and some lucky breaks in finding people willing to talk about what had been going on. Finally, the two lay women published a long article in Metro magazine in 1987 entitled “The Unfortunate Experiment.” 4 The article won several journalism awards and unleashed a scandal so large that a government inquiry was launched. The inquiry 5 was centred on Professor Herbert Green, a professor of medicine who taught and carried out research into cervical cancer from the time of his appointment to NWH in 1956. A year later the Papanicolou smear was introduced to New Zealand and overseas studies showed that it could identify cell changes at an early stage, which allowed successful intervention. Studies also showed that if there was no intervention, while not all pre-cancerous cells developed into full-blown cancer, at least a third did. 6 Therefore, diagnosis was an important preventative measure. The treatment for pre-cancerous cells in the 1950s was hysterectomy – total removal of the uterus and therefore of a woman’s ability to have children. By the 1960s cone biopsy was used but this could also reduce chances of conception. Herb Green was a strong opponent of abortion and very concerned by anything that reduced a woman’s fertility. Green told one of his patients that a woman would throw away her unique possession if she lessened her chances of conception and he said it was a woman’s heritage to keep her uterus. 7 This was not uncommon discourse for the time; women’s magazines ran articles on how a man should be particularly nice to his wife if she had a hysterectomy even though she was no longer a ‘real woman.’ And a gynaecologist was on record saying, “I think of menopause as a deficiency disease like diabetes.” The discourse of the time located female identity in the uterus.
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Green, who espoused these views, developed an overwhelming concern to save women’s fertility which led to his increasingly rigid approach to cervical problems. At first he suspected that carcinoma in situ (CIS – the precursor stage) did not develop into cancer and eventually he persuaded himself that this was true. To test his belief he personally saw every woman who came to NWH for colposcopy 8 for more than twenty years. He followed the progress of these women, recalling them often, taking cell samples but never treating them because he wanted to show the natural history of the disease and prove that cervical screening was a waste of time. At the inquiry stories were told of women who had been recalled for more than twenty years, many of whom had developed cancer and some of whom had died. One woman had had 44 smears taken over 22 years, 24 of which showed malignancy. She also had fifteen biopsies and eleven general anaesthetics during this period without being told that anything was wrong. 9 Another woman who had ten smears showing malignancy, had small bits of her cervix removed for analysis but was given no treatment and was told she was being recalled because she was “an odd bod” and Professor Green found her very interesting. 10 This, of course, persuaded these women that they were being carefully monitored and no harm could come to them and for 23 years the second woman returned to NWH until she developed full-blown cancer and the Professor Green was no longer interested in her. It was the figures from this research that came to the attention of Coney and led to her writing the Metro article, which provoked the inquiry. At the inquiry experts were flown in from all over the world to testify that Green’s ideas were contrary to all evidence, that his presentations at international conferences were greeted with disbelief and that reputable journals had ultimately refused to take his papers. This raised the question of why doctors in New Zealand had not questioned his experiments. It turned out that some had but the power of his position and his personality had over-ridden their objections. He was also responsible for educating medical students and residents and his rejection of the utility of screening programmes persuaded many GPs not to give smear tests to their patients. This was despite material published both by the World Health Organization and health departments of other countries, which showed significant reduction of deaths from cervical cancer when adequate screening programmes were introduced. 11 Charlotte Paul, commenting on the inquiry, wrote The Declaration of Geneva requires doctors to affirm that “I will practise my profession with conscience and dignity”; “the health of my patients will be my first consideration”; and “my colleagues will be my brothers”. To whom should doctors be accountable first: their own conscience, their patients or their colleagues? 12
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And she answered her own question by saying that, in the case of the NWH affair, the notion of clinical freedom was used to defend the actions of colleagues despite many realising that these actions were inimical to patient safety. The inquiry and the publicity generated caused some reforms in obtaining patient consent and monitoring the ethics of research. Patient advocates were appointed at NWH and there was general consciousnessraising regarding women’s right to information and more compassionate treatment. The government also had to take on board recommendations from the inquiry that there would be benefits from screening programmes and that a National Screening Register should be set up in New Zealand. This is where my study comes in. 3.
Waikato Area Health Board Study – 1992
In 1988, immediately after the inquiry into the unfortunate experiment, the government decided to set up a national cervical screening programme. In the end it would be set up between 1990 and 1992. This would be initiated by the Department of Health which had just had a series of Ministers of Health from the national (Conservative) government. The ideology of the time was economic and technological, a perspective which contributed to the second scandal and inquiry. Subsequently a Labour government came into power and Helen Clark, now Prime Minister, became the Minister of Health. She commented that there was too much emphasis on computer systems and not enough on smear taking but no action resulted from this memorandum. 13 Initially, a trial system for setting up a register to record eligible women, smears and results was set up in Dunedin in the South Island. In 1990 the government decided to set up another trial programme in the North Island in the Waikato Area Health Board (WAHB) area. I was contracted to construct a telephone questionnaire on the topic because of my experience in both market research and academic health research, especially in the field of women’s health. In preparation for composing the questionnaire I read material on cervical smears: technological material on brush versus spatula; doctors’ recall systems for their women patients, statistics on smears, cytology, histology, women’s experiences and so on. It was clear that many surveys had been carried out on women who had had smears taken but there was little material on those who had not entered the system. Socio-economic status was obviously implicated with its concomitants of financial position and social confidence. 14 Therefore, I persuaded the WAHB to let me do a series of focus groups to find out women’s understandings of the process and the words they used before constructing the questionnaire. They agreed and I set up focus groups of old and young, rural and city women to discover if they knew what was inside their bodies, what could go wrong and what interactions they had
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had with doctors over this process. In light of The Lancet editorial quoted at the beginning of this chapter, I was particularly interested in the words women used about this process. The findings are discussed below. 4.
The Gisborne Inquiry – 1999
The third element of this study comes from what came to be called “The Gisborne Inquiry.” This inquiry was held between April and September 1999. 15 The Gisborne inquiry was triggered by another lay woman asking questions about why she and others, who had had regular smear tests over the years and had been told that their cells were normal, then found themselves with cervical cancer. Where the NWH scandal came from a doctor suppressing the knowledge that some women had abnormal cervical cells, in the Gisborne case one particular laboratory which read the smears was reading them inaccurately in a large percentage of cases. Again the fault was attributed to one doctor, the pathologist Dr Michael Bottrill, but the resulting inquiry raised many more questions about quality control and registration of laboratories, training of cytologists and pathologists and, ultimately, about the National Screening Register. This had been set up without building in the required safeguards that could have revealed the poor laboratory work affecting all the women of the East Coast area as Dr Bottrill’s laboratory was the only one serving this area. A news story in the New Zealand Herald said, “Ultimately it was the flaws in the National Cervical Screening Programme that permitted Dr Bottrill to practice as he did.” 16 Once the possibility of a major problem was revealed, 23,000 smears belonging to 12,000 women and read by Dr Bottrill were sent to Sydney, Australia, for re-reading. Two thousand women were advised of abnormalities they had not previously been told about, and 616 cases of cancer were identified, 519 of which had not been picked up by Dr Bottrill. 17 Once again there were the testimonies from women to the inquiry which were similar to the submissions to the NWH inquiry. The first part of the inquiry showed that laboratory standards were inadequate and steps were put in place for increased quality control. The second part dealt with the inadequacies of the National Cervical Screening Register. WHO and health departments of countries with their own national registers had published widely on the appropriate way to set up a register. They said it should be centralised and that it should comprise three sub-registers which could be cross-tabulated: (i) population statistics, which would provide a record of all women in the appropriate age groups for contacting and recall; (ii) cytology, which would create a record of smears taken; and (iii) histology, a record of what steps had been taken for women with abnormal smears and a record of outcomes. The process should also be “opt-off,” that is, women would actually have to ask not to be put on the register.
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As it turned out fourteen separate regional registers were set up, one for each area health board. 18 They could not communicate with one another so if a woman moved from one place to another her records had to be put on paper and posted, histology could not be linked with cytology so no one could monitor what happened to abnormal smears and it was opton, so that every single time a woman had a smear she had to sign a release to allow it to be put on the register. Doctors advised very strongly against this configuration but it went ahead, duly proving its inutility and was finally and expensively centralised in 1997, too late to pick up the misread cases of Dr Bottrill. The advice about setting up the system had come largely from computer companies, not fully aware of the medical requirements of an adequate screening programme. 19 It had also been hampered to a degree by women’s groups and Maori 20 groups. They looked at the ethical problems revealed by the first inquiry and put in so many safeguards over women’s privacy that the material collected for the register was not even available for statistical purposes. Maori groups went even further, saying that they were tired of being defined as the group with the worst health statistics (Maori women actually get cervical cancer at about four times the rate of women of European descent 21 ) and therefore no information was to go out about Maori women. 22 The whole point of a screening programme is that it is medical and preventative and intended to reduce the number of deaths from cervical cancer. It needs monitoring and it needs to be based on efficient medical practices from surgery to cytology lab. With national statistics it would have been possible to see that the East Cost was reporting fewer cases and further investigations made. However, the barriers that were imposed on accessing the data, both by lobby groups and by the constraints of privacy legislation, led to Ailsa Duffy writing that The lesson to be learned from unduly focusing on informed consent [and, by implication, the right of women to remain unspeaking] should have been learned from the deficiencies of the opt-on screening register. 23 5.
A question of power relations
Both these inquiries raised questions about research ethics, professional gatekeeping and informed consent. However, a very interesting thread that ran through these three investigations was the question of language, much of it based on unequal power relations. It is recognised that the ways in which we communicate are constrained by the structure and forces of those social institutions within which we live and function. And, as Norman Fairclough has noted, “language has become the primary medium of social control and power… [and] ideology is pervasively present in language.” 24 The power vested in the medical side
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of the patient-physician encounter is huge. It is based, justifiably, on wide professional knowledge but it is also based in many cases on gender inequalities, on the neediness and unwellness of one party and the need to placate the specialist so as not to be described as difficult. The inquiry into the NWH affair revealed notes on the patients’ records defining them as ‘worriers’ or ‘neurotic’ or ‘difficult.’ It was also noted that only public patients, that is, those not under a private gynaecologist, were included in Professor Green’s experiment. In this case gender relationships, power and the ownership of language were important issues. At the NWH inquiry, Dr Peter Davis, made a submission that said the relationship of woman to doctor brings unacknowledged sexual politics into play. It enormously widens the gap in status that already exists between doctor and patient and extends the stereotype of passive woman and dominant male. Thus, the physician may approach the woman with advice, commands and decisions rather than discussion and the relationship takes on the quality of a parent-child relationship. The woman is reluctant to ask questions because of her feeling of ignorance or a reluctance to cause trouble. She feels helpless in the encounter. The infantilisation of women is rooted in the power imbalance between doctor and patient. This was illustrated in Clare Matheson’s evidence that when she told Professor Green that she was sick of coming to the hospital for repeated checks, he replied, “You will do what you’re told.” 25 The testimony of both doctors and patients to the inquiry and the resulting publicity sparked debate in newspapers and magazines. The patients all spoke of their helplessness in the face of medical procedures and the medical testimony demonstrated patronising behaviour, lack of understanding and dissimulation. There were two interesting statements by doctors in letters to Metro magazine. One said women were acting like kids who were starting to grow up and were disappointed to find that their parents were not perfect and another wrote that the inquiry “made poor old Herb into a symbol of medical oppression of the fair sex.” 26 The phrase “the fair sex” is in itself patronising. Furthermore, the National Women’s hospital inquiry coincided with the rise of the second wave of feminism in New Zealand. The feminist journal Broadsheet had been established with Sandra Coney as editor. It was interesting how many doctors chose to call Coney and Bunkle “feminists” as a term of abuse and intending to denigrate their findings rather than addressing the substantive issues of unethical research. The pathologising of women’s reproductive area sets an ideological base for understanding women’s health and ill health. As well, the use, both in popular and medical literature about women’s prime identity being in her reproductive organs contributes to this idea. Sexuality as well as reproduction comes into this construct and sexuality is equally pathologised in this discourse: because human papilloma virus (genital warts) is implicated in cervical cell change, and it is sexually transmitted,
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there was a suggestion originally that only promiscuous women needed smear tests. (Promiscuity in this context was initially defined as having more than one sexual partner. Later it was defined as having had four partners.) As Harold Waitzkin says, the focus on the individual is part of a powerful medical ideology which stresses the importance of the individuals’ lifestyle as the source of the illness. 27 6.
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The focus groups I conducted also dealt with the language women used to name (or not name) their body parts and in their interactions with doctors. Each group began with the women involved being given the drawing of a female body shape. They were asked to draw the internal reproductive organs and name them. They were told they could use any words they knew or used or had heard in the naming. On the whole, all women knew they had a uterus or womb or baby home, but most did not know the word ‘cervix’ nor what it was. Details like fallopian tubes were absent from virtually all diagrams. After they had finished the drawings, there was a general discussion of the words they used to name their hidden parts, how they used them in communicating with doctors and how they understood what doctors were saying to them. There was also discussion about the process of smear taking, their experiences and their understandings of the purpose of smears. Typical statements about their understanding of their bodies and the smear process drawn from the focus groups include the following: “It’s very sensitive isn’t it? I mean it’s our innermost parts and the most sensitive part. On the whole women are not baring it all, they’re just not that way inclined, especially not our generation.” I asked if they had ever requested a smear from their doctor. On the whole they waited to be offered one because it “seems rude” to ask a strange man (or woman) to look at your genitals. However, one woman said she had asked her doctor and when I asked her how she had phrased her request she answered, “Well, I said I’d been sleeping with a guy who is bit suss – could you have a look at me.” Another woman said “But is that a smear?” and the first one replied, “Oh well, while they’re in there they look at everything.” If the general practitioner sends them a reminder for a smear, they usually go but they do not like it. “I hate it when the doctor says Whoops it’s a bit cold. Sorry.” And “I hate having smears done. It’s degrading and it hurts.” And “Yeah, I hate the way he says flop your legs open like a frog.” And “You leave your pride at the door.” Seemingly trivial matters loom large for some of the women. “I’ll tell you one thing that always bothers me – what to do with my pants. Do you stuff them in your bag or fold them up. I don’t know where to put them and afterwards you are all messy.” In matters of vocabulary they tended to refer to their genital area as “down there.” “If I have to say anything to a doctor I say
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‘down there’ and if it’s my piles I say ‘down there at the back’!” Another said, I know the word vagina but I wouldn’t use it to a doctor because it’s a doctor’s word. I wouldn’t want to say to a doctor ‘I’ve got a sore vagina’ but I couldn’t say ‘sore fanny’ either. We need to find a more casual way of talking about it. The issues of unequal power were clear and the women felt they had few rights of ownership over their bodies: “My doctor would say you have thrush and I would say OK but he wouldn’t say what caused it.” She was asked why she had not questioned him further and she said “I felt the whole thing was not my business even though I knew it was, I mean, it’s my body but these are professionals.” Another woman had been told she had thrush and she thought it was polite way of saying syphilis. The evidence given at the Gisborne inquiry contained many similar statements from the women whose smears had been misread. The central theme of their testimony was that they did not feel it was their place to express their unease about continuing physical symptoms and that the doctor must know best. An older woman’s statement showed the complexity of the interaction with her doctor. He took her blood pressure which was a bit elevated before she had her smear. She said: He said that might be because of what you’re having done. I thought that was a sensitivity by the doctor. At one time doctors didn’t think that you might be a bit stewed up yourself about having such things done. You know, I felt a lot better about it and even to the extent that he rang twice for the nurse and she didn’t come and he actually went on with the examination even though she wasn’t there and I felt that was a feeling of trust in me, you know, that he didn’t have to worry that I was one of those people who might kick up a fuss. I sort of came away feeling thoroughly better that he treated me like that. However, she went on to say that it was probably not typical and that if she had mentioned the little things that made her feel better he wouldn’t have understood. 7.
Conclusion
The power to speak about the unspeakable runs through these three investigations of the process of taking cervical smears or having
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them taken. Even grammatically, women are put in the passive voice. These inquiries and studies cover three decades although the experiment leading to the National Women’s Hospital inquiry was carried out over an earlier thirty years until its results provoked the first inquiry. In the half century this chapter covers there have been huge changes in the lives of New Zealand women. The second wave of the feminist movement raised their consciousness about women’s rights and many of these were enshrined in legislation to do with equal pay, equal job opportunities, equal access to finance and support for women alone. Women now take more major roles in the political life of the country: at the time of writing this chapter the Governor General, the Prime Minister, the Attorney General and the Chief Justice are all women. Nonetheless, gender inequities still exist and most firmly in the area of sociobiology. In the female body biology and culture meet to articulate society’s patterns of gender role organisation and ideological and sociopolitical dynamics. Gendered ideologies that were current in past times still echo today in ideas about purity and pollution. Female sexuality is judged differently from male sexuality; although both are potentially productive, women must, literally, bear the consequences, and therefore her sexual activities are seen as qualitatively different. Class inequities also still exist. In a country without an hereditary aristocracy, the professions like medicine and law provide an upper class. This is the context to these studies of cervical cancer screening. In the NWH inquiry it became clear that a powerful and wrong-headed man was able to bully most of his colleagues, with a few honourable exceptions, into silence about his unethical research. Women, whose cervices were being monitored but not treated in cases of malignancy, were treated like children who should be seen but not heard. And when they and their advocates finally spoke out attempts were made to dismiss them as ‘feminists,’ and therefore male-hating raving radicals, or disappointed grizzling children: voices that could be discounted. The official inquiry validated these protests and recommended protection for women in more stringent ethical requirements for research projects. It also recommended the creation of patient advocates who could accompany people in hospital settings and help them understand procedures, terminology and their rights. The intention here was to give voice to those who were unwell and uncertain. My study of the early 1990s showed that when women had to deal with matters to do with their genital and reproductive areas they were still hesitant about the words to use. The outside of the body is named with everyday shared words but apart from the uterus/womb all the hidden bits inside the body have only what women referred to as “doctors’ words.” It has been suggested that those who name something also control it and the women in these focus groups discussions agreed. Not only could they not use doctors’ words to doctors but they were also reluctant to claim any
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rights over their own bodies in the face of doctor pronouncements – “I know it’s my body but he is the professional.” Because this reticence was recognised, most general practitioners set up systems to offer their female patients smear tests regularly. However, not all groups were silent. Both women and Maori had been politicised by the last two decades of last century and there were able advocates for their rights in many fields. With the setting up of a National Cervical Screening Register submissions were invited from many groups about how it should be done and here current ideologies dominated: the technological input from computer companies and the voices of women’s and Maori groups whose consciousness had been raised about their rights. The previously powerful voice of medicine was muted which led to a tragic paradox. Women and Maori, scarred by the NWH experiment, said that information about them could not be used for research purposes: they used their voice to create a new silence. And so the second disaster came about because the Register was created in a way that did not allow its records to be monitored and reveal anomalies. There is no real conclusion to this discussion. A simple-minded “doctors bad, women good” – which infused so much early discussion of women’s health issues – is not useful. The two inquiries discussed here show that a cultural complex of voice and silence, power relations and the construction of gender, can come to an unspeakable concatenation which can only be untangled by legal inquiry. However, the unspeakable can perhaps be forestalled by constant analysis of prevailing ideologies and their subtexts which privilege certain voices over others. This means that setting up a cervical screening register does not begin with computer or medical technology but with an analysis of the cultural meaning of categories like female, Maori, doctor and the words they use to describe and communicate. Because, as was pointed out in the book of Job, words without knowledge darkeneth counsel. 28
Notes 1
Editorial, “Cancer of the Cervix: Death by Incompetence,” The Lancet, (August 1985): 363-364 (emphasis added). 2 William McIndoe, Michael McLean, Ronald Jones and Peter Mullins, “The Invasive Potential of Carcinoma in Situ of the Cervix,” Obstetrics and Gynaecology 64, (4 October 1984): 451-458. 3 Sandra Coney, The Unfortunate Experiment: The Full Story Behind the Inquiry into Cervical Cancer Treatment (Auckland: Penguin Books Ltd, 1988), 14. 4 Phillida Bunkle and Sandra Coney, “An Unfortunate Experiment at National Women’s Hospital,” Metro, June 1987, 46-65.
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Silvia Cartwright, The Report of the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters (Auckland, Government Printing Office, 1988). 6 Coney, 50. 7 Ibid. 8 The microscopic examination of a cervix which has shown some cell abnormality. 9 Coney, 101. 10 Ibid, 107. 11 Ibid, 31. 12 Charlotte Paul, “The New Zealand Cervical Cancer Study: Could it Happen Again?” British Medical Journal 297 (20-22 August 1988): 533539. 13 Editorial, New Zealand Medical Journal 1132 (25 May 2001): 221 quoting a memorandum sent by Helen Clark to the Director General of Health dated 25 August 1989. See also Skegg 1989. 14 See, for example, Richard Taylor et al, “Cervical Screening by Socioeconomic Status in Australia,” Australia and New Zealand Journal of Public Health 25 (2001): 256-260. 15 Ailsa Duffy et al, Report of the Ministerial Inquiry into the Underreporting of Cervical Smear Abnormalities in the Gisborne Region (Wellington: Ministry of Health, 2001). 16 New Zealand Herald, “Cancer Questions Linger” 23 April 2003, . 17 National Screening Unit, “Background Information – National Cervical Screening Programme (NSCP)” (12 September 2003). 18 Duffy et al, 155. 19 Ibid., 158. 20 Maori are the indigenous people pf New Zealand. They are Polynesian and make up about 12% of the population. 21 Coney, 31. 22 Duffy et al, pp.187, 190 and Section 6. 23 Ibid., 234. 24 Norman Fairclough, Language and Power (London: Longman,1989), 3. 25 Coney, 243. 26 Quoted in Nicola Armstrong, “METRO MANIA: The Cartwright Inquiry Revisited.” A paper presented at the Fourth International Congress on Women’s Health Issues, Massey University, Palmerston North, New Zealand, November 1990. 27 Harold Waitzkin, The Second Sickness: Contradictions in Capitalist Health Care (New York: The Free Press, 1983), 58. 28 The Bible, Book of Job, Ch.38, verse 2.
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Bibliography Armstrong, Nicola. “METROMANIA: The Cartwright Inquiry Revisited”. A paper presented at the Fourth International Congress on Women’s Health Issues, Massey University, New Zealand. 14-17 November 1990. Bunkle, Phillida and Sandra Coney. “An Unfortunate Experiment at National Women’s Hospital.” Metro, June 1987, 46-65. Coney, Sandra, The Unfortunate Experiment: The Full Story Behind the Inquiry into Cervical Cancer Treatment. Auckland: Penguin Books Ltd, 1998. Cartwright, Silvia. The Report of the Committee of Inquiry into Allegations Concerning the Treatment of Cervical Cancer at National Women’s Hospital and into Other Related Matters. Auckland: Government Printing Office, 1988. Duffy, Ailsa, Druiscilla Barrett and Maire Duggan, Report of the Ministerial Inquiry into the Under-reporting of Cervical Smear Abnormalities in the Gisborne Region. Wellington: Ministry of Health, 2001. Editorial. “Cancer of the Cervix: Death by Incompetence.” The Lancet 17 (August 1985):363-4. Editorial. “And Now the Failure of Cervical Screening.” New Zealand Medical Journal 1132 (25 May 2001):221 Fairclough, Norman. Language and Power. London: Longman, 1989. Macdonald, Judith. Cervical Screening: Women’s Experiences and Understandings. A Report for the Waikato Area Health Board. Hamilton: University of Waikato, 1992. McIndoe, William, Michael McLean, Ronald Jones and Peter Mullins. ”The invasive potential of Carcinoma in Situ of the cervix.” Obstetrics and Gynaecology 64,4 (October 1984): 451-458. National Screening Unit, “Background Information – National Cervical Screening Programme (NSCP)” (12 September 2003).
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New Zealand Herald, “Cancer Questions Linger” 23 April 2003, (23 April 2003). . Paul, Charlotte. “The New Zealand Cervical Cancer Study: Could it Happen Again?” British Medical Journal 297 (20-22 August 1988): 533539. Skegg, David. “How not to organise a screening programme,” New Zealand Medical Journal 102 (1989): 527-528. Taylor, Richard, Hassan Mamoon, Stephen Morell and Gerry Wain. “Cervical Screening by Socio-economic Status in Australia.” Australia and New Zealand Journal of Public Health 25 (2001):256-260. Waitzkin, Harold. The Second Sickness: Contradictions in Capitalist Health Care. New York: The Free Press, 1983.
Note on Contributor Judith Macdonald, PhD, is a Senior Lecturer at the University of Waikato, Hamilton, New Zealand. She is an anthropologist who has carried out fieldwork in the Pacific. Her research interests include Pacific and migrant health, women’s health and communication.
